Hello everyone - Last Fall I was diagnosed with an upruptured aneurysm, discovered incidentally through an MRI I got for pulsatile tinnitis in my left ear (cause for that still uknown). The aneurysm is on the right side - paraclinoid ICA, approx. 4 mm. Specifcally, the report says “there is a laterally projecting aneurysm with narrow neck arising from the lateral aspect of the paraclinoid ICA measuring 3.7 x 3.8 mm diameter.” Like so many on this forum, I freaked out. Then I started doing my homework. I’m reading that this location is difficult to treat. I saw one neurosurgeon but left more confused and anxious than before. This week I see a 2nd neurosurgeon for additional info. I live in the Seattle area. Like many of you, I am having a lot of anxiety around this. (It didn’t help that I was diagnosed with complex sclerosing legion/hyperplasia in my left breast during the same week, and our dog died the following week. I’ve since had the breast surgery biopsy that went fine.) I have been reading about what the cerebral angiograms are like, the different treatments, the risk of doing nothing (observing) vs treatment…and my anxiety has not abated although I am somewhat better informed. I just turned 63 and had quit full time work a couple of years ago. My husband and I love adventure travel and were looking forward to doing more of it soon. Now, I’m afraid to venture beyond any big city with a major hospital - (although we are going to Cartegana, Colombia in Feb. for five days). Does anyone else have experience with this kind of aneurysm? I don’t know if it’s “with” or “without” the posterior communicating artery, as I learned today that the odds of rupture are quite different based on which of those is present. Thank you so much for any info - I’m so glad I’ve found this group and am so impressed with what so many of you have gone through.
Welcome to the group!
My aneurysm is at the bifurcation on the LICA so I can’t help with yours, sorry. It is also a multilobed that ruptured. There is a wonderful neurosurgeon in Spokane if you can travel that far. He was at WFBH in 2013 and came in to see me a few times in ICU, he also assisted my neurosurgeon on a couple of angiogram and my second coiling. He was probably there when I ruptured, but I don’t remember him. I don’t know if he is doing aneurysms anymore but here’s his info https://www.neuroandspine.com/doctors/kunal-shah-md
I’m a friend of a guy who is still in ICU from a ruptured aneurysm it’s been 17 days today and I cannot stress how much more grateful you can try to be that it was found before it ruptured if that’s any comfort Also I am praying for you
Pulsate tinitus is caused usually from a condition called FMD. I have FMD and get the pulsate tinitus upon waking in the morning sometimes. I had a 7mm annie and had a PIPELINE STENT placed. The aneurysm is completely gone at present. I am still on asa 325 and hope to take the 80 mg dosage after April of this year. I had a left ICA annie in anterior area. Justin Caplan was my neuro at Johns Hopkins. The best Dr and treatment anywhere as far as Im concerned, may be worth a trip… after all, its your brain. xo. Psalm 23…Gods heart was for me and I rested in His care more than anything,
I had an aneurysm , small 3.5 mm and I operated through endovascular procedure, using a Pipeline embolization device, and I am OK, I am 52, and my procedure was done 6 years ago. Talk to an interventional radiologist because there are risks with this procedure, thought less than open brain procedure.
depending on your age, your physical conditions in general, the size and location of your aneurysm you might have many (or just one) options of treatment. In the last 4 years there have been new developments and better treatments. The options are clipping, coiling, or other endovascular treatments (pipeline, glues, stents). Depending on the specialist that you talk to they are going to sell their services and sometimes that one might not be in your best interest, and may be there is another option that is better. In any case, from my own experience it is better that you do the best test there is to look at the size, form and location of your aneurism, that is Cerebral angiogram, because in many instances a Computerized tomography (CT) might miss the existence of another (or even more than one) aneurism that requires treatment sooner than the one that you just found. That was my case! I had two! and the one that required treatment was not seen with the first test.
Sometimes doctors see a big $ sign in your face (but not all) so just do your job, research, read . Then with your exams, and questions in a paper go a talk to 2 other specialist: one that does coiling and one that does Pipeline embolization device and make an informed opinion on your own. Also enter in the forums that are specific to some of the treatments here, for example there is one for Pipeline embolization device where patients discuss their experiences.
Many of the questions that you have are answered in the FDA (food and drug administration (look for Pipeline Flex Embolization Device) , though it is very technical it is important because it outlines risk and benefits of different procedures depending on your age, overall health, and your aneurysm.
Also look in youtube for “Pipeline Embolization Device” and google The “Neurosurgical Atlas, by Aaron Cohen-Gadol, M.D.” and check their patient-resource-center
Good luck and take care
I just wanted to chime in and say that I live in Eastern Washington, but I was treated in Seattle by Dr Louis Kim at Harborview and he was wonderful to me! He put in PEDs for me after I had my initial major surgery in Phoenix, AZ (in 2012 the procedure I needed his hospital wasn’t yet qualified to do per FDA regs for “off label use” of the PED - I needed it in the vertebral/basilar arteries but it was still only recommended for the Carotid). He did his additional PEDs for me nine months after my AZ surgery and he was amazing. I would highly recommend seeing him for an opinion - he’s very familiar with tough cases.
Sarah-D - I am so glad to hear that! I am going in to see Dr. Kim at UW Medical Center tomorrow morning (provided we can get there through the snow). He was also recommended to me by some friends whose daughter he helped. Thank you so much for “chiming in!” It means a great deal to me.
Bermudez_Ana - Thanks so much for that important info!
Please let me know what Dr Kim recommends for you!
Cerebral angiogram next. Then most likely a Flow Diversion stent to “kill” the aneurysm (after I get back from vacation). Thx!
I’m in uk
Mines on the communicating artery a challenging one so I’m told
Mine was found last July I’ve had ct scan mri plus mra and ct angiogram now waiting for cerebral angiogram
Devastated love traveling and same unless there’s a hospital near by I don’t venture very far
I’ve amazing son and 2 lovely grandchildren
I love life now I’m terrified
I’ve also tinnitus in both ears with whooshing sounds
Which is so scarey to
Life changing and risky decisions
Check with your travel insurance company to make sure you’re still covered with your new diagnosis. I could not get coverage while going through testing and while I was waiting for a neurosurgeons appointment. I still can’t with my company till 3 months after my neurosurgeon asserts that everything is stable.
I hope everything goes well for you.
Dr. Kim is amazing. My aneurysm burst in 2007 at work in Seattle. Dr. Gavin Britz did the coiling and I spent 23 days in ICU. I was told at that time it would probably grow back…sure enough 4 years later it did. Dr. Britz moved on and Dr. Kim did my brain surgery. Plan A was a bypass surgery, that didn’t work so plan B was clips. 10 hours later he fixed me. Dr. Kim doesn’t show much emotion but when I had my follow up with him he came in dancing. 9 years later I’m retired from Boeing and back to my roots in Eastern Washington. I have to go back in 2021 for follow up testing as he wouldn’t release me to a neurosurgeon in Eastern Washington. I trust him completely.
Dr. Louis Kim and Dr Danial Hallam at Harborview were my doctors for a Ruptured Subarachnoid Aneurysm, Dec 2010. They definitely had the qualities required!!! I only have good things to say about them both.
Caplan is my neuro as well. He repaired one of my ICA aneurysms with a pipeline embolization.
UPDATE: This past Monday I had a cerebral angiogram at Harborview Medical Center in Seattle, under the direction of Dr. Louis J. Kim. On Tuesday my husband and I met with Kim about the results. We were amazed to learn that the aneurysm is not intracranial, rather it is in the cavernous carotid artery. In other words, it has the lowest chance of rupture, and even if it did, it would not bleed into the brain. No matter where in the world I might be if it ruptures, I just need to take a commercial flight home and see him - I don’t need to worry about getting to a neurosurgeon immediately. The rupture would cause bleeding behind my eye but would not kill me. It is a wide neck and 5mm. Kim recommended just watching it - an MRI in a year. If it has not grown, watch it again next year. If it has grown, then we talk about possible treatment (probably a flow diversion stent). This was the best possible news we could have expected to hear, and we were somewhat in shock (in a good way). If anyone here is wondering whether or not to get a cerebral angiogram, my advice is DO IT. It’s the gold standard method by which to see exactly what is going on in your head. Thanks to everyone for all their recommendations and personal stories. I will definitely continue to be reading this forum as my journey is not over yet but it is certainly a better journey than I had originally expected.