Hi guys, I am new here and wanted to tell my story. I’m not the patient but I have been taking care of her health issues for the last 15 years. That’s my 82-year old aunt with myriad health concerns who was just diagnosed with a 9mm ‘saccular aneurysm’ in the left distal ICA (c1 §, inferior direction). There are also ‘focal stenosis’ in both ‘proximal ECA.’ “Both” here seems to mean more than one (I’m reading from the dx report). Plus, the dx includes (1) mild-to-moderate leukoaraiosis and (2) amyloid angiopathy evidenced by ‘multiple microbleeds’ in cerebellar hemispheres. That’s a lot to digest, I know, and these findings hit us from the left field!
Yes, it seems that hypertension was behind these new issues. I thought it was under control and her kidneys (CKD: chronic kidney disease stage 3b-4; GFR of 28-33) were being managed with medications. Alas, it had consequences that we had not expected. She got the dx by chance while visiting her home country, S Korea, because we noticed a scalp protrusion from a light head trauma. Boy, what story the MRI told in its terse, 50-word diagnosis.
We though her advanced age (82) makes her an unlikely candidate for an invasive treatment. However, the specialist we saw recommends “coil embolization”, which he says is relatively safe for the elderly in their 80s. Based on my checking, the size of her aneurysm (9mm) is quite large and it indeed seems to be a ticking time bomb! Plus she may be in the early stage of neurodegenerative issues which could only worsen over time. The specialist claims life expectancy is higher in S Korea and their technology is more advanced in geriatric neurosurgery (Well, I’m not so sure about that!)
Anyway, we are getting a second opinion to see how credible the diagnosis is. But it doesn’t look so good. And the lesson learned is, hypertension affects more than just kidneys. It could cause aneurysms and neurodegenerative issues. I don’t remember any doctor telling us that could be an issue down the road. The question then is, should we also worry about aneurysms at other locations?
Thanks for starting a new topic George! It does seem your family is on quite a medical journey. It sure is a lot to understand but let me try to clarify some things…
Sizing aneurysms is pretty complex, though it shouldn’t be and it depends on neck ratio as well. A lot of people used to quote the ISUIA here but for me personally I believed it to be incorrect as I ruptured with a 5mm aneurysm at the age of 53. The ISAT more closely resembled what I had experienced, Here’s a paper that explains the confounding size issue Definitions of intracranial aneurysm size and morphology: A call for standardization - PMC.
Coiling is an endovascular treatment and is considered minimally invasive as compared to a craniotomy. For coiling they go through the groin or radial artery and up to the brain, for a craniotomy which is invasive, they remove part of the skull and access the aneurysm through the brain. The ICA is the Internal Carotid Artery of which there are two, left and right. The ECA is the External Carotid Artery of which we also have two, left and right. The ECAs come from the Carotid Artery of which we have two, left and right.
I had to look up life expectancy in S. Korea and found this South Korea: life expectancy at birth by gender 1950-2100 | Statista. I would imagine it to be dependent on how long she has lived in the States and medical care as well as her medical history though as that could make it change a bit. Surprisingly, this is what the CDC says https://www.cdc.gov/nchs/fastats/life-expectancy.htm. I know we also have to look at the ages of our parents and grandparents as a general guide to how long we might live. In my family tree, if we make it past 50, it’s our 80’s to 90’s with the odd ones living to 100 or a a bit over.
Is your Aunt back in the States yet or does she plan on staying in her mother country? I’m unsure if coiling is safe for someone with a lot of health issues as I’m not a doctor. It certainly needs to be considered as you are doing I believe. The risks of coiling is compaction, hemorrhaging, and the anesthesia as well as any reaction to the dye. For me, my neurosurgeon said I wouldn’t have to worry about any more when I teased her about me being 80 and she would still be shoving more coils in on my third coiling.
Hi Moltroub, thanks so much for your extensive response to my post. Learned a lot and I am periodically rereading your post and following the links you enclosed to make sure I understand everything! That aneurysm size and morphology article is something I must consult before our meeting with a doc next Wednesday, to make sure I’m on top of everything when I confer with the doc. The size and location, plus potential complications for coiling due to nearby stenosis, if any. I want to make sure that the size and location are accurate: I was given the CD disk by the first hospital. Is that CD actually h helpful and can a layman understand what’s in it, e.g., does the MRI CD show and verify the size and location of the aneurysm? I was visiting with my laptop which has no CD drive and will go to a nearby Kinko’s to check it out.
Hi Moltroub, thanks again. Yeah, well, it gets complicated what she wants to do since after talking to a few people, given the aneurysm size (9mm), it may not even be safe to fly. One relative said if we told the air line we have an aneurysm the size of 9mm, we may not be able to get on board. I was very surprised to hear that since she flew with it and that aneurysm would never have been known had she not gotten that accidental head bump and took MRI! Did some research and it seems that aortic aneurysms are more dangerous for flying than the brain aneurysm, but I can’t be sure. That’s why we’re seeing another specialist on Wednesday. Yes, the original idea was to fly back to New Jersey and get a second opinion and decide on “watch and observe” vs. coiling (we can’t in good conscience let her undergo clipping: it would be just too traumatic). But then I am learning now that you should be checked out by specialists where you will eventually be treated.
Before the trip, she was getting ready to move to Texas, where her daughter is. So, first, she would have to get back to the US, pack her stuff, and then move to Dallas, which would be her long-term residence in the US. Ideally, that’s where she should have her procedure done. But that was all before the suggestion that even flying might not be too safe.
Life gets complicated, remember to breathe. I was told when I ruptured that they really don’t know what causes aneurysms but there are a lot of theories. Head trauma is one of my favorites since I’ve had more than a few knocks on the head over my lifetime, I was also told most aneurysms don’t rupture which is one of the reasons we are in the rare category I presume. Personally and again not a doctor, I think when we look at all the risks websites state, they are the same risks for most everything -smoking, high BP, drug usage, etc, I recall on my last repair that a Resident came asking to do an ultrasound of my left thigh for some research she was doing. Her working hypothesis was linking obesity with aneurysms. To look at me, I’m a short, fat gal. I readily agreed and she did the ultrasound- no fat in that big old thigh. I suggested she do the other, none there either. I apologized for not confirming her hypothesis, lol.
What if she has had her aneurysm for a long time, and actually flew to her mother country with it and no one knew because she hadn’t had the bump on her head? I’ve never flown outside the USA but we do have a commercial pilot that may better be able to answer the questions on flying. I will send him a PM to see if he can help out.
My parents both lived until they were 84. They were sound of mind and I went with them to many medical appointments after I ruptured. Dad accused me of being a snitch when I told their Internist something he hadn’t but was important. For me, I was determined to honor, respect and allow them to make all their own health decisions until they couldn’t anymore. When their decisions didn’t match up with what the specialists wanted to do, I strongly supported their decisions. So for me, I would support your Aunt moving to TX to be with her daughter and have any medical issues addressed there. I would also have a discussion with her about just going straight to TX and having her items packed and shipped to TX from NJ as she can sign any medical releases at the new providers in TX. I don’t know how family dynamics are for you and your culture or if she is allowed to make her own health decisions which may change things for her. I had a wonderful cousin by marriage who was Korean, alas she is gone now and I can’t ask her. I do apologize for my ignorance.
Hi Moltroub, Thanks again for your response. Yeah, sometimes, cool common sense is what’s really needed than in-depth medical knowledge to make the best decision. That’s because we really have to understand all possible scenarios of the rupture and what kind of extensive care that would entail should she become disabled. The first thing obviously is for the patient to understand that she would need a caregiver when she’s stricken: she’s been fairly independent and her husband just passed away 5 months ago, so she has been through a lot already this year. But the reality is that she cannot stay too far away from family members nor live alone. We are trying to get her to digest that slowly so as not to alarm her.
I’ve heard different things from different people and even though I think hypertension is behind all this, it is possible there may be other reasons. She also has an autoimmune condition (antibody positive but only light symptoms) and a liver issue, so we can really trace this to her health dysfunction in totality. We want the least invasive scenario given the circumstance. So that’s why talking to this other specialist would be crucial, I think; hopefully, he would be less marketing-oriented than the first guy. She would first need clearance to use the return portion of her ticket, so she can fly home. Stay tuned.
I truly believe she can fly with a cerebral aneurysm as the plane is pressurized. I hope @Pilotpacking can enlighten us. He had a 33mm aneurysm!
One thing you and your family can do is send the imaging to a doctor in the State she will be residing and get an opinion that way. I recall several members having difficulty if they went out of State to repair an incidentally found aneurysm but we have had other members who had a repair, relocated to a different State and have had no issues finding another Neurosurgeon. Some will even travel back to their Neurosurgeon who did the procedure for their follow ups!
Look at the nearest large city in TX where her daughter resides for a Neurosurgeon who specializes in cerebral aneurysms. Less populated areas may not have one. You can search our site for Neurosurgeons in that area or just ask the group on a new topic for suggestions. Sometimes there will be a charge, it depends on the hospital and of course the Dr.
It sounds as if you and your family are preparing for the worst case scenario, don’t forget to expect the best. Aside from my rupture, which required my parents to babysit me whilst BH was at work for a few months, I’ve only had to have someone stay with me for 24 hours after a procedure. There was one diagnostic angiogram that required someone to stay with me for 72 due to the massive hematoma on my femoral artery. There is also a lot of information available on the internet about the risk of rupture due to location of the aneurysm. So look at those as well.
Hi, thanks. Yes, we were completely clueless flying in. People have told us it wouldn’t be that much higher risk to fly. Docs did say, “Well, what can you do, it’s one of life’s decisions.”
Hi Moltrub, thanks. We got a second opinion from a guy who gave us a reality check: he explained her kidney functions are too low for the coil procedure. Then he said her amyloid angiopathy is resulting in “microbleeds” and that could always become more serious: this is completely unrelated to the brain aneurysm she has and could deteriorate whether she goes through with coil/clipping or not. In other words, he did not really see much “upside” in doing anything but “watching and observing” and let things take their natural course. Then we went back to the first guy to see where he was coming from: we showed the opinion from the second guy; he says he “knows” the other guy and then he completely changed his stance, saying he agrees that the coil option is not appropriate. So after that marketing talk, he completely revised himself (although he never acknowledged this). He either does not remember what he told us before or completely forgot to look at her GFR when recommending it initially. Then he said, now that coiling is out, “surgical clipping” via craniotomy could be an option. Really? This is an 82-year old woman. Naturally, he’s lost some credibility in our eyes.
So we are inclined to get a 3rd opinion: this was a consultation and no new MRI was taken and it only cost us ~$40 (no insurance) for the surgeon to look at the MRI and render his opinion: no wonder medical tourism is big in South Korea. We are gonna find a neurosurgeon from the biggest 5 hospitals in Seoul and get another opinion before deciding what to do. But it’s looking pretty grim: there is no optimal solution for the predicament we are in. And “doing nothing” is looming as a viable option – even though with a rupture, the probability is 75-80% that she will either pass away quickly (or within 6 months), or recover with significant impairments to her neuromotor functioning that would require hospitalization or full time attendance by caregivers. Not the situation you want to be in.
I don’t know that a craniotomy would be a good thing for her considering her age and other health issues. Coils aren’t near as invasive as a craniotomy. I realize your family wants this fixed but please remember most aneurysms never rupture. Can you reach out to a Neurosurgeon in Texas for another opinion?
That too. Her return ticket is for mid-December. When she returns, the choice is to look at surgeons in New Jersey and Texas. She was planning on being here for a while and she’s comfortable having doctors that can speak the language explain to her. Plus, it is cost-effective to do so. So we are prolly gonna get the third opinion and then fly back and, ideally, look for someone in Texas. I can’t imagine many doctors recommending the clipping route but since the first guy is shot, we want to hear it from another guy why “doing nothing” indeed might be the best option.
Many of our members get on the watch and wait list, it’s not uncommon. I get she likes doctors who speak her language. All hospitals in the USA have to have translators which isn’t the same since many languages have to use a translator over the phone.
I hope you and your family speak Korean when she comes to the States to ensure the translator isn’t adding or removing what the surgeon says. I’ve worked with a few translators in my field and have either had family members tell me after the call what the translator did or with one guy who was our Spanish translator, I knew enough Spanish that he wasn’t telling my family I was working with what I was actually saying and the girlfriend confirmed my suspicions.
I’m really glad to read that you have a very tight knit family that is offering a lot of support. I also wouldn’t trust a Doctor who couldn’t remember what he said…
Yeah, thankfully all the records are in English, including MRI analysis and opinions. They’re used to sending things off to the US and dealing with US hospitals, so I don’t really expect much trouble on that front. But I understand many doctors and hospitals would like to redo the whole thing from the very beginning. We’re seeing a 3rd guy who is not a surgeon but who is a radiologist specializing in aneurysm MRIs. We really can’t trust the first guy at all so we want him to look the MRI and assess risk from the very beginning. If necessary, we’ll retake the MRI. We saw 2 surgeons and their opinions tend to be surgery-friendly even though the 2nd guy came out against it. Then, we may see a 4th guy, potentially a neurosurgeon, to reassess the risk. The first guy was recommended to us because a relative works there and they would give us favored treatment (read: “discounts”). You don’t want “discounts” for this type of work: sometimes, you get what you pay for. You want an unbiased opinion not tilted toward either surgery or “do nothing” by someone who can accurately interpret risk.
Could not agree with you more! We really need to have Doctors who are thinking what is in the patient’s best interest and unbiased. It is really hard to for me to find Doctors who can think outside the box because I don’t respond like the medical books say to conventional treatments. I count my lucky stars every medical specialist I have now is exactly what I need.
We often see hospitals like John Hopkins or Barrow’s being at the top of the list to repair aneurysms. In NC we have Duke, California has UCLA and UCSF. It’s not that Neurosurgeons in other places aren’t as good, it’s just the bigger hospitals like the one in Seoul see more patients. I’m not sure why I wasn’t flown to Charlotte but I’m counting those stars that I was sent to Winston Salem.
Please keep us posted on what the specialist says.
Yeah, those are great hospitals and some docs in Korea go on exchange programs there to share knowledge. The special thing about South Korea is that it is a nation of hypertension sufferers given very hot and spicy dishes like kimchi they enjoy. When you eat hot dishes in copious amounts, hypertension prolly results, followed by strokes and brain aneurysms, as well as kidney dialysis and organ transplants. The endgame for many are sanatoriums catering to stroke victims and paralytics. So the big hospitals in S Korea seem to know what they’re doing and medical tourism has taken off in recent years catering to tourists and Koreans living overseas. Even though the hospital staff may not be very good English speakers, all results are written in English to accommodate tourists and expatriates, who may need follow-up care elsewhere. We’ll take full advantage of that while we’re here.
You’ve taught me so much about S.Korea’s medical care, thank you! I am very ignorant about other countries and to learn something is always a great day to me. I had an MRI done at the hospital in the county I now live in on request of my Neurologist. The Radiologist took a long time to read it, so long I got frustrated and told my Neurologist to send the image to my Neurosurgeon at WFBH. He did call the Radiologist and found out that he didn’t want to make a final decision as he had nothing to compare it to, what the heck? It was when Atrium Health and WFBH merged but seems no one was telling the doctors. I told my Neurologist that they were one group and he should be able to get everything the Radiologist needed. I learned about the merger through an email from WFBH. My Neurologist was able to get the image to my Neurosurgeon and get all the images to the Radiologist who seemed to have plagiarized the previous MRI but my Neurosurgeon said she didn’t have to do another image, nor the usual angiogram, I would be going in for my stent as soon as she could get a bed.
When you speak to the new specialist, you may want to ask about a diagnostic angiogram. Cerebral angiograms have long been considered the “gold star” for cerebral aneurysms. If your Aunt cannot tolerate the contrast dye, she may not be able to be coiled as they use contrast dye. I found this https://www.kidney.org/atoz/content/Contrast-Dye-and-Kidneys#:~:text=CIN%20is%20a%20rare%20disorder,receiving%20dyes%20can%20develop%20CIN.
Hi Moltrub, thanks for your comment. Believe it or not, we just saw our fifth specialist! Fifth! Well, had a rocky start with the first 2 but the last 3 have been remarkably consistent in that she needs to at least explore the coil option since the risk of rupture is pretty significant. One guy estimated the risk at 5 times the normal aneurysm given its size (9mm), its shape (highly irregular) and its location. The 3rd specialist actually pointed out that there are 2 aneurysms: one that’s 8-9mm and another that’s 3-4mm. Thankfully, the second one doesn’t seem to be in as bad a location and could for the time being be ignored – at least that was the view. Since what we had was an MRI (not MRA) designed really for a scalp protrusion, they had to squint their eyes to figure out the second aneurysm. The last 3 neurologists all concluded that the coil option should be explored for the first aneurysm, the big one: that means doing the exploratory procedure which will prepare and stake out the proper locations in case there are any minefields such as stenoses. We are still trying to decide where to do this – her children will have more input on this than me. But one guy calibrated the risk this way: about 5% chance per year that it will rupture, given its shape and location (one of the 3 “worst locations” that typically rupture, he said). That means, we shouldn’t wait too long since the downside of it rupturing is infinitely bad (75% chance of death or being disabled and paralyzed).
You and your family are really working hard at what is best for your Aunt! I wish all families could be as supportive. And yes, her children will have stronger input. Hopefully your Aunt understands what is going on and tell the family what she wants,
I believe what you’re saying is the last three want to do a diagnostic angiogram. This is where the surgeon takes a catheter up through an artery either the radial or femoral and takes a look at what the MRI suggests she has for a definitive answer. Mine always looks at both sides of my brain. Angiograms are considered the “gold star” in everything I’ve read. Some of our members say their surgeons will go ahead and do the coiling while they are in there, I like that idea! Mine would do the diagnostic, wait a week and do it the coiling. The only time she didn’t was my last repair for the same angiogram but she used a stent with the coils. Both require a contrast dye which will have to be taken into account because of your Aunt’s other health issues. They will also need to know her GFR due to her kidney issues.
Hopefully, whoever does it will “force flush” it out. My last angiogram I went into severe anaphylaxis and my surgeon ordered a lot of bags of solution to get it out of me, the RN told me it was a force flush, the surgeon told us she was going to push it out fast. The CMA was going to disconnect it and I told him no, fortunately, the RN came in because of our arguing and told him to follow the surgeon’s orders. They used 7-8 bags I think. I was still on the IV by the time the air bag on my radial artery had deflated. I learned about the radial use here from our members and were they ever correct, it was much easier on me than the femoral access, She kept me on the IV until discharge, it’s the best I ever felt after an angiogram.
5% doesn’t sound like much unless you’re the one with the aneurysm does it? I think the three highest areas of risk for rupture are the anterior communicating artery, the internal carotid artery, and the middle cerebral artery. I can look it up if you need me to.
Mine was in the left internal carotid artery bifurcation and irregular as it had more than 24 daughter sacs at 5 mm. My career choice lead to a lot of stress but oddly enough I ruptured when I was doing my hobby on my day off and making Christmas gifts for family, so no stress at that specific moment. I thank the Universe I did not rupture whilst driving. I would have been mortified if I hurt anyone or worse yet killed someone. I am disabled due to my rupture. There are a lot of different scores when one ruptures but I only know my Fisher score was a 3 and I ended up having vasospasms for 21 days.
Please let us know when you can what’s happening.
Yes I’m so thankful I had coiling instead of Clipping.