Cerebral angiogram results and planning ahead

[Keeks]

Hello everyone,

Thank you for the warm welcome to the community, it is truly a blessing to be able to connect with one another and share our stories. Especially as a new patient, it has been helpful to know that there is a support group where we have a place to reach out to as we navigate through a very unique and uncertain season of our lives.

I just got my angiogram completed and it was confirmed to be a left ophthalmic artery aneurysm that is bilobed. The ophthalmic artery arises from the anterior lobe and is further described as dysmorphic and wide necked measured at 5 x 3.5 x 3.2mm. I have a follow up appointment in several weeks to discuss the imaging and go over treatment options. I won’t jump to conclusions but from my understanding and through research I believe a flow diverter is going to be their recommended treatment option.

I was curious to see if anyone has a similar aneurysm and has had any issues with their vision post surgery? Any other symptoms post treatment to be aware of or anything that you think would be helpful to keep in mind?

Many thanks!

[Moltroub]

First topic! You go Ms. Sue! Mine is in a different place and a different type, multilobed up at the LICA bifurcation. I eventually received a stent but it’s also different being a Neuro Form Atlas rather than the typical flow diverter. There’s lots of different contraptions a surgeon can use, it’s based on what they prefer and if the contraption works for your specific needs. It does seem Flow diverters are quite popular, you may be on to something! One way you can double check is to actually go to the manufacturer’s website and see where and what they recommend for its use.

I will let those members who actually have an aneurysm In the ophthalmic section come and share, seems we have many that have had one.

Welcome again!

[Keeks]

Thank you @Moltroub for your helpful response! I really appreciate it. Going to the manufacturer’s website is a great suggestion. I am in the process of absorbing as much information as possible and this is another great source of information that I can start studying. Thank you again!

[Moltroub]

Don’t forget to look up your surgeon to see what they specialize in which you may have already done. I’d also look at the different places for reviews which may indicate the surgeon’s preference if the review mentions it. But a word of warning, mine was not being reviewed well when she first came to Baptist mostly because people didn’t understand her medical terms I think. She’s also not from the South and spoke faster than most folks raised here which for me was incredibly difficult to keep focused when I first moved here. Oh and being raised in California, different words were used. I had the hardest time understanding why someone wanted to know where I was born and who my parents were. Is that really a stranger’s need to know? We never asked where people were from, never even asked for their last name when I was growing up. I thought I’d moved to a different planet and I’m fairly sure Dr. Q-W struggled as well. However she had moved from working at the Army Hospital I was born at, I tried to get up to salute her and kept hollering “Officer on Deck” which just got a lot of stares and the poor RN in charge of me had to really struggle to keep me in the bed. I tried saluting but they had so much stuff attached, I couldn’t get my hand up high enough. . We, BH and I learned quickly at the start of our seemingly monthly appointments to ask her to “dumb it down”. She did and she thanked me. No one had been telling her they didn’t understand what she was saying. I think they need a model of the brain that can open up showing the arteries including the Circle of Willis. Always make sure you’re not nodding your head in agreement with your medical specialist if they aren’t making something perfectly clear. It’s a bad habit folks here in the States do and we often forget it’s more of just acknowledging one is hearing the words of another, rather than actually understanding them. There’s no harm in telling your doc to talk to you like a 5th Grader, I told Dr. Q-W she needed to speak to us like we were in Kindergarten​

[Keeks]

You raised so many thoughtful and salient points, and I really appreciate the information and perspective you shared! It is very encouraging and has further reinforced the importance of speaking up and having your voice be heard. This is something I have been working on before the aneurysm but it resonates with me even more deeply now and feels more vital.

Every step of this process has given me an opportunity to reflect on this and think about how I want to carry it forward. Looking back on the angiogram, I realize that I should have spoken up and asked for more medication to keep me comfortable. My tendency is always to endure discomfort rather than voice it—I’m resilient, I have a high pain tolerance, and my instinct is often just to push through. So, true to my nature, I toughed it out and endured some moments of intense pain during the procedure.

But I’m realizing more and more that resilience doesn’t have to mean enduring everything silently. Going forward, especially with future angiograms and the surgery itself, I’m determined to advocate for myself more clearly—to speak up, ask for what I need, and not hesitate to make my comfort and well-being known.

[Moltroub]

Having a high pain tolerance can certainly throw a wrench into the works. Dumb, ignorant me thought the morphine prescribed after I ruptured was causing my brain to be working incorrectly and causing the headache so I requested them to stop using it. Someone asked if I was sure and I said yes my brain was fuzzy - wrong answer!

When we get a cerebral angiogram the surgeon puts us in what I think is called twilight sleep. Not really fully under so the surgeon can tell us when to hold our breath and when to breathe for the images they want. I did see the Resident put a local in my wrist when she marked the artery and right before she started using the catheter. There’s only been one time I’ve felt the catheter on a femoral entry up near my abdomen and that was with a cardiologist checking my heart. Most times I’ve never even felt it once one got into my artery for my neurosurgeon. The burn most people feel with the dye didn’t register with me. I’m allergic to the dye at the high end, severe anaphylaxis on the last diagnostic procedure thankfully I was able to tell Dr.Q-W we have a problem unfortunately the RNA wasn’t ready with both shots and had to be told to inject me with the Benedryl she did have. Hindsight all these years later has eased my anger a good bit and I can chuckle because I can remember both Dr. Q-W and her Resident both telling me to breathe while we were waiting for the RNA to come back with the other shot. I firmly believe that knowing how to do relaxation breathing was the main reason I survived even understanding the medication was what stopped the reaction. I really wanted them to stop telling me to breathe, I was doing my best and then Ms Ryann came and stood by me and was telling me to breathe as well. If I was someone who reacted to stress in more a flight than fight mode, my adrenaline would have probably gone through the roof. I’m not and it’s in my mind because I have practiced relaxation breathing since the mid ‘70’s so it’s just as much a part of me as my graying brown hair for the most part. I’m not sure what pain you felt during your angiogram but make sure you tell both the surgeon and the anesthesiologist who comes in to introduce themselves. I’d also suggest you not ask the anesthesiologist why they’re even bothering introducing themselves as they won’t be in the room but they’ll be walking the hallways flirting with the RNs. I have a plan now that if Dr. Q-W ever has to go back into my brain, I will insist to see the RNA has both shots at the ready, before Dr. Q-W starts or one of her Residents. Ms. Ryann did get it in my chart as we got into an argument about it when I was still madder than a hornet. It’s highlighted in red. My Sports Medicine MD showed me! I will invoke my federal patient rights if I need to, it’s a very effective option getting medical personnel’s attention. I’m also going to request the saline push Dr. Q-W ordered to help remove the dye prior to my procedure. It helped tremendously and I didn’t need to do the three 32 ounce bottles of Gatorade and twice that in water for months afterwards, just a couple weeks I believe. Besides my stent placement where RNA John said he’d put me in my happy place which he did, it was absolutely the best I’ve ever felt after an angiogram. Right before Dr. Q-W starts, I’m going to belt out the “I’m Henry VII, I am, I am” song by Herman’s Hermits just because it will be my 8th angiogram.

Absolutely be your own health advocate, no one else can do it as effectively as you can. My generation is most likely the last ones who believed doctors knew everything and would never dare question them. Everyone one of my medical providers encourages questions, the majority are female. All of the doctors happen to have been Fellows, even my PCP. I didn’t consciously look for them, they just fell into my life. Over the decades, there’s been a handful who were what I now know to have been medical gaslighting a term Ms Ryann taught me which I’ve read is still a common practice with female patients. Get a new provider if you have one gaslighting you. You are important! Never allow anyone to think you’re not.

[FinWhaleFan]

Hello and welcome @Keeks!

Alas, my aneurysm was located elsewhere (PICA) so my experience and symptoms won’t be of much to help you in that regard.

However, I did want to chime in as definitely one plus post-rupture is that I am much better at advocating for myself. Admittedly, I have learned to do it in a style that best suits me as opposed to adopting others’ style, but I am grateful to have that experience under my belt - although of course it is an ongoing lesson, as I am far from perfect at it.

It must because I am in a different hospital system, but my anesthesiologists don’t flirt always flirt with the nurses LOL. During one of my “traditional” brain surgeries (shaved head, etc.), the anesthesiologist warned me pre-op that this combination may make me throw up a little bit post-op. Guess what? It did! However, when I had subsequent brain surgeries/procedures, I would mention that experience with the anesthesiologist du jour, and say yup, that drug had the effect as predicted. I honestly didn’t care if they ever gave me that drug again, so if I throw up a smidge, who really cares (obviously, my stomach is empty so it can’t be extensive of course)? However, anecdotally they always seemed to avoid giving me that same drug again, since that was the only time it happened.

You are most DEFINITELY resilient. A very VERY long time ago, I worked for a place that did research, and one study we did examined the pain of people who had had a workplace injury. My takeaway lesson from that study was that it is far better to get pain under control at the beginning, as it can be difficult to put it back into proverbially get that genie back in the bottle. So, I never try to wait things out

@Moltroub will be happy: I just did a quick search looking for resources on managing pain, and this article from the UK NHS showed up (admittedly, I know you are not having chronic pain). I have a feeling #2 will get a chuckle.

10 Ways to Reduce Pain

You are strong, and you’ve got this! Don’t forget to give yourself a lot of grace though since you are running a marathon and not a quick race!

Please let us know how your appointment goes!

Fin Whale Fan

[Keeks]

@FinWhaleFan and @Moltroub thank you both for hitting home on more great points! Getting a new provider has been on my to do list, as my PCP has unfortunately proven to be incompetent and dismissive … not just in this new matter with my aneurysm but with other aspects of my health as well. That has added to the frustration in this already stressful journey … and stress is something that we all want to keep at bay. Definitely a good reminder to keep up with the breathing techniques and practicing relaxation!

Getting pain under control at the beginning really hit home. I should have mentioned the pain the moment I felt it as the catheter was being advanced through my arm. The tugging and pulling sensation as it was being threaded up was quite painful and my entire arm is still achy 2 weeks post angiogram. Also, had I asked for more medication from the start of experiencing pain, it would have also saved me from having to endure the burning sensation from the contrast dye… which for me personally was an experience like none other. The best way for me to describe it was that it felt like there was a fire lit and concentrated in my inner ears and I was being burned alive from the inside out. Just as I was about to say that I couldn’t endure it any longer, the sensation went away… but boy I do not want to experience that ever again.

I guess I thought the worst was over once I got past the catheter going up my arm. This was a new sensation for me. I was informed that I could feel a warm sensation on my face when the dye was injected and I thought it would be similar to my experience getting a CTA. But I was not informed of the sheer intensity and level of pain it could deliver! For sure an experience I will never forget and one that I will avoid experiencing again by speaking up and asking for better pain management.

Thank you again for your encouragement and support!

[Moltroub]

That sounds horrible! Definitely your surgeon needs to know about both as does the anesthesiologist so your cocktail can be adjusted accordingly.

The anecdote about the anesthesiologist walking the hallway and flirting with the RNs was true but it was at a local hospital in Outpatient Surgery and only the one. I probably shouldn’t put them all in the same category, but everyone of the males laugh and shake their head in agreement .

I have no clue where the anesthesiologist is at the hospital I get my angiograms done at. After they introduce themselves prior to a procedure, I never see them again, she certainly wasn’t called in when I went into severe anaphylaxis. I have an unrelated surgery coming up and I need to ask them how they will know if there’s a problem. Who is supposed to notify them? Is it someone on the team?

Why does it seem the UK has at times better patient resources? It’s a great link and I did chuckle.

[FinWhaleFan]

Wow! FWIW, every time I have had an angiogram I have never had a lick of pain or even felt any sensation whatsoever.

Depending on the cocktail du jour, sometimes it felt like I was completely asleep the whole time as I don’t remember a thing.

The last one, however, I feel like I was awake the entire time, as all I did was focus and do some box breathing. I distinctly heard my neuroradiologist say “GREAT!” and I knew that meant the aneurysm was occluded, so it was a very happy moment.

When do you have your follow-up with your neurosurgeon??

You’ve got this!!

Fin Whale Fan

[Keeks]

I just had my follow up and have a pending surgery date in about a month for a flow diverter! However, I was a bit sad to hear that it may either take longer to shrink and/or even with surgery there is a chance that my aneurysm may not completely occlude. Visual disturbances as well, we will have to see how they manifest. He kept emphasizing that nothing is 100% in medicine which I understand… whatever the outcome I trust in my doctor and trust that it will be the best outcome possible for me. I’m definitely looking forward to getting this surgery done!

[Moltroub]

I hope you do get to hear the word occluded in your journey. Definitely keeping you in my thoughts! We’ve heard all kinds of words in relation to mine, but never fully occluded. I think one time, maybe with the balloon assist she said something to the effect of “Could you please try to help me out some?” Of course I took her literally because that’s how my brain works now so I stuttered out No work, no go get medical degree. Ohana 36 pound, no have Lab. Several appointments later I was able to explain my life, my way since she thought I was doing too much heavy work. I reminded her she had told us I was allowed to do anything I wanted. She may have said that’s not what she meant. I definitely said something about mean what you say, say what you mean. When she installed the stent, I’ve never seen her so excited and she believed she had gotten it. Aggravating thing, doesn’t want to help her out either.

Hang in there! Sending good energy your way.