Hello everyone, my name is Liza, Im so happy I found this group. I live in Athens Greece and this is my story. A very good friend had a rupture 1 month ago and is still in the hospital so I desided to have an angiogram because my mother had a clipped unruptured aneurysm 12 years ago and is doing fine up to this time, she is now 78. Things in this country are very different. The majority of us has puplic heath insurance and if we say that we want an MRA because of a headache the doctors will prescribe imidietly and we pay 35 euros with the health system. What we dont have is awarness and support! Im 53 and of course no one ever told me that I had to get scaned all these years because my mother had an aneurysm. So anyway, my friend is in the intensive care and I got scarred so I went to get a scan and I have a 4mm anerysm in the carotid artery probably beetween the cavernous and clinoid. So now what? I have been to 2 top private surgeons and one says its small and we can watch it, but he would have the surgery if he was me with flow diversion but it has many complications like death and bleeding 5% (I almost fainted with fear). The other says I will have it coiled and in 2 days I will be home. I have no idea what to do. Im trying to educate myself from the internetā¦
Best regards to all
Hey Lizq,
Welcome to Benās Friends
My name is Merl, Iām a member of the modsupport team here on Benās Friends. Now, I am NOT a Dr, I need to say that first, but hereās my interpretation:
Firstly, you have a āfamily historyā that increases your risk. Yes, 4mm is considered small but size is not the only consideration. Itās positioning or where it is, is also important. For example, if itās where a vessel divides or splits, the vessel walls can be thinner and therefore seen as more of a risk. The āWaitānāwatchā approach is common with smaller annies. For some people smaller annies can be slower growing and therefore less likely to rupture. BUT because you do have a family history, the risk could be increased.
Now, the complications. There is no surgery that doesnāt come with associated risks. The medicos must tell us of the risks involved, this is often given as a %. When I asked about the worst outcome, I too was told death 
but when I thought about it the reality was they were chopping my head open (craniotomy). I thought, as a worse case scenario, it was an obvious risk. The 2 options youāve been given, flow diversion and coils, are both vascular procedures (in the vein) and much less invasive than a craniotomy, thatās a good thing. And much less chance of complications. From some reports flow diversion has a greater occlusion rate for larger annies, but for smaller annies both diversion and coils have a similar occlusion rate. In these cases often it can come down to which surgeon you, the patient, are more comfortable with.
One thing I have learnt on my journey is that every surgeon has their preferred method of treatment and if you saw 4 differing drās, youāre likely to get 4 differing views on how to manage it all. Itās not that one is right and the others are wrong but rather differing opinions on the same issue.
This is not a nice position to be in. We know this because weāve lived it too and who better to ask than people who have been there themselves. Thereās lots of good people here who know from their own personal lived experiences, so come talk to us.
Merl from the Modsupport Team
Good morning Liza! Iāve moved your very first post to its very first topic so more people will read it! If you donāt like the title, feel free to change it. I think itās great that your mother is doing fine after 12 years, thatās awesome.
Interestingly, many people around the world are not informed that there may be a genetic link to cerebral aneurysms and family members arenāt advised. When I ruptured, ten years ago, my Neurosurgeon told us whilst I was being released from hospital to call my siblings and their children, though it may have been at my first appoint a couple weeks after my release. When I joined this support group nine years ago there was rarely any discussion about it. Several members started discussions and more awareness became of it, at least here. There has also been many articles written by doctors on the possibility of genetic links in the last few years.
I think, but do not know, most countries donāt focus on things that are rare. Perhaps they feel their money is better spent on what affects the general population more. It makes sense but the ways of focusing monies on common health issues doesnāt help those of us with uncommon or rare issues. If you have the time and energy, perhaps you can link up with a neurosurgeon and start a group in Greece! That would be really cool.
MRAās are but one way to find an aneurysm, CTs are the other. I believe the āgold starā ultimately goes to the diagnostic angiogram for the neurosurgeon to know exactly what theyāre seeing. Iām surprised neither have offered it. The latest literature that Iāve read and I havenāt read even a tenth of them Iām sure, is that thereās many more variables than size and location now, though the literature often talks about them as there is a difference between anterior and posterior as well as shape. Besides learning about the various arteries in the brain, welcome to the world of statistical analysis. This is the most recent meta analysis Iāve found Surgical outcomes of patients with unruptured anterior vs. inferior circulation aneurysms: A metaāanalysis
When a doctor throws statistics at me, I always ask if it is based on personal experience or something they read. I never trust statistics unless the numbers can be supported by real data. To be real data, there has to be a collection of numbers, not something trumped up. From what Iāve learned since I ruptured is that not every hospital in every city, county or State keeps records so thereās not much reliability here in the USA, overall. Sometimes Iāll even try to research the paper Iām reading to see the paper the authors are quoting. I donāt do it often because itās time consuming and often frustrating as I donāt have access to many, just whatās available to me for free. Greece may be different, but ask the surgeons.
Any procedure has its risks starting with the anesthesia and moves on through the dye used and the procedure itself. One has to weigh the all the risks of everything age and health have to be factored in as does lifestyle. Being that I ruptured and didnāt know a thing about aneurysms most would assume that I would say get it fixed before it ruptures. They would be incorrect in their assumption. I am on the fence about it as many cerebral aneurysms donāt rupture is what my neurosurgeon told me. I would refer to her expertise and experience.
Flow diverters are used with many members here with good outcomes. Flow diverters come by many different names. Hereās an introduction on them, realize that this is about four years old and probably doesnāt include all of them as medical science is always coming up with new technology Introduction: History and Development of Flow Diverter Techn... : Neurosurgery.
There are also stents that can be used. My personal experience is with coils which is what I received when I ruptured. Six months later, I was coiled again as they had compacted. A year and some months later, I was coiled with a balloon assist. Then in 2020 I received the Neuroform Atlas Stent and more coils. My type of aneurysm was multilobed and only 5mm, so more of a blackberry than a blueberry. Apparently theyāre not very common. It is also in the Left ICA at bifurcation up near the top of the Circle of Willis.
The most important advice I can offer is to absolutely not nod your head in agreement with a doctor if you donāt understand what theyāre saying. They work on brains, they donāt read minds. It seems to be a habit with Americans, I donāt know about other countries, but Iāve known many people from other countries and they seem to do the same. Ask for clarification, ask them to ādumb it downā for you. When I realized BH had no clue to what Dr. Q-W was saying, I asked her to talk to me as if I was five. We donāt use the medical jargon they fall into and the vast majority of us donāt know the arteries in the brain, many donāt know the lobes or that thereās two hemispheres and what they do, until we start researching.
I realize I have probably been overwhelming with no succinct information. Learn the brain, then the arteries. Ask for an angiogram so youāll be more educated on your aneurysm. Know all the risks of the procedure. Good luck and keep us posted!
Dear Merl, thank you so much for taking the time to respond to my message, its been very helpfull. You know how it goes, its the first days I found out and im in a panicā¦
Thank you so much! Iām already not feeling alone in all thisā¦
Ī£ĻĪ¹Ļ Ī¤ĻĪÆ 20 Ī¦ĪµĪ² 2024, 4:09 Ī¼.Ī¼. Īæ ĻĻĪ®ĻĻĪ·Ļ Moltroub via Brain Aneurysm Support Community <notifications@ben-baf-community.discoursemail.com> ĪĪ³ĻĪ±ĻĪµ:
You are definitely not alone, you have us now!
Ī£ĪÆĪ³ĪæĻ ĻĪ± Ī“ĪµĪ½ ĪµĪÆĻĻĪµ Ī¼ĻĪ½ĪæĪ¹!
I hope Google translate did this correctly, I donāt speak a word of Greek
Thank you so much! Also great Greek translation!
Ī£ĻĪ¹Ļ Ī¤ĻĪÆ 20 Ī¦ĪµĪ² 2024, 10:36 Ī¼.Ī¼. Īæ ĻĻĪ®ĻĻĪ·Ļ Moltroub via Brain Aneurysm Support Community <notifications@ben-baf-community.discoursemail.com> ĪĪ³ĻĪ±ĻĪµ:
Iām a 10 year survivor too and I agree with everything Merl & Moltroub wrote. You are definitely not alone. We will be thinking about you Lizq. So happy you found us on this website. Feel free to look around the site and you will find people who have gone through the same worries you are facing now. Consider yourself wrapped in hugs from all who read your post!
Thank you Cathy!
Ī£ĻĪ¹Ļ Ī Ī±Ļ 23 Ī¦ĪµĪ² 2024, 4:09 Ļ.Ī¼. Īæ ĻĻĪ®ĻĻĪ·Ļ Cathy1 via Brain Aneurysm Support Community <notifications@ben-baf-community.discoursemail.com> ĪĪ³ĻĪ±ĻĪµ:
Hi Lizq,
I cannot make a recommendation to you as to which route to take however, I can share with you my story. I was diagnosed with a 6 mm aneurysm almost a year ago. I was experiencing pulsatile tinnitus and had an mri/mra which found the aneurysm. I live in San Francisco and am fortunate to have access to excellent medical care. My doctor and I discussed my options and I made the decision to proceed with coiling with the possibility of a stent. I am an anxious person and knew it would be difficult for me to only be monitored. I was 75 years old and had completed a full round of radiation and chemo for cancer so I had not yet gained back all my strength. Every one has their own experience and mine went pretty smoothly. I was admitted to the hospital on a Thursday and was home within 24 hours. I discussed with the anesthesiologist reactions to anesthesia and had no vomiting. I was admitted to a neurology intensive care unit for the night where I was closely monitored. I also was given medications after the procedure to control headaches and vomiting. The experience was far easier for me than I expected. It was discovered that the aneurysm had developed daughters which would make a rupture more likely so I am thankful I had the coiling done. Communicate with your doctor your concerns. They will do their best to take care of you no matter what your decision. Good luck to you. At least you know that you have an aneurysm which is the most important thing.
Marianne
Thank you so much Marianne, I have seen another doctor and I have decided to monitor, it is in the ICA. If I go for treatment Flow divertion is the best choice for me because the neck of the anerysm is quite wide so coiling and stent isnāt the best option.
Thank you again!
Best regards
Liza