Daughter, 26, BA unruptured. Can you help with tough decisions?

Rachel;

My name is Jim W. I am 69 years old and I suffered a ruptured brain aneurysm back in 2010. I have to say I have fully recovered without any significant effects. I am responding to your inquiry because the Doctor who treated me was Dr. David Fiorella out of Stony Brook Hospital. He is originally out of the Cleveland Clinic. Dr. Fiorella along with Dr. Woo developed a minimally invasive procedure to treat aneurysm’s. I read an article several years ago about Dr. Fiorella treating a teenager from TN who had a very large oddly shaped aneurysm which no other Dr. would treat. If you’re interested you can contact Dr. Fiorella @ 631-444-2772. Further if you want I can look up an article which was done in Newsday about Dr. Fiorella and that teenager. You can contact me via this site.

Jim W

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Welcome Rachel! I didn’t know a thing about cerebral aneurysms until I ruptured and that was when I was 53. Just wanted to drop in and give my 2 cents worth…

Personally, I would have the angiogram. The doctor can better decide if it needs coiled. Mine was considered very small at 5mm. With just the size, it probably would have put me on the wait and watch list. But it was a multilobed, meaning a lot of little “daughter” sacs attached and that would have made it a candidate for coiling. Doctors go by studies and experience on deciding if an aneurysm is worth fixing or not. It sounds as if you have a doctor that is forthright and that’s worth everything!

I’m glad you’re reporting that the doctor has told you both the risks involved. Sometimes the risks of a procedure outweigh the issue. As with most everything, location is the key with size and type following closely. I’m guessing you and or your daughter have been doing a lot of research on the internet. It can be confusing. Some ideas are to stay within a five year limit. Older studies are interesting but new techniques are always being developed. I, myself, just had a recently approved stent put in to control my aneurysm. My surgeon shared that the Neuro Form Atlas Stent would allow her to have more options if needed. The other thing to remember is cerebral aneurysms are rare and the study groups won’t be that big. Japan has more aneurysms per capita and I think Finland does as well. I’m not sure of any studies down in Australia where you live, but there is probably some out there. Please remember that some papers are not studies at all, but a doctor or team of doctors gathering information from studies such as this one: https://www.ahajournals.org/doi/full/10.1161/STROKEAHA.118.021030

You will also need to understand statistics to understand the data gathering and conclusions in order to judge for yourselves if it is relevant information. Here is a free crash course https://www.schoollearningresources.com/PDF/_Basics%20of%20Statistics.pdf

In some studies you will read that high blood pressure is an indicator of rupture. Myself, and many others here who have ruptured never had high blood pressure. I was on aspirin therapy when I ruptured but there is a theory that individuals put on aspirin therapy do not rupture. It all comes down to they don’t really know and can only hope for the best. With aneurysms, like people, no two are the same.

You will need to understand the Circle of Willis. It is the area of most aneurysms in our brain. Members here will usually talk about location and size of their aneurysm. One good place to start is the Brain Aneurysm Foundation for basic information.

I guess I must have overwhelmed you, if I have I apologize. This is a huge issue for those of us and our family members who have aneurysms. It can become a bigger issue if we rupture.

All the best,
Moltroub

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Hi Rachel, Im sorry to hear about your daughters diagnose. I also had a unruptured aneurysm and was also given the option of wait and watch approach or coiling was an option. To me, they both weighed the same. I went for a second opinion just for comfort. I learned from the second doctor that I could have this angiogram that would show the characteristics of the aneurysm which would give a better sight as how to treat it. Just knowing that, was a positive direction in helping me deflate some anxiety. I decided to do the angiogram and immediately after the procedure the doctor gave me my options. He recommended a procedure called webbing. Its a titanium weaved basket thats deployed into the aneurysm. It’s a fairly new procedure that can replace coiling. Anyways, the angiogram was a easy for me but left me with head aches. Being on the other side of the decision to have the angiogram, I have no regrets and glad I did it. It’s a year an 4mo since surgery and have had one angiogram follow up and one more to go. I forgot to mention that I’m 59 yrs of age, much older than your daughter. I hope you can take the time to research the webbing procedure. I think you will find it very helpful. If you have any questions please reach out to me. Prayers for you, Shari

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Hi there,
I have a small unruptured aneurysm that was discovered after onset of headaches and some visual issues. My first two years after diagnosis I got mri’s done every three months then the next two years every 6 months. After that it was every year. It’s been 11 years. I am 55 years old and in relatively good health with pretty low blood pressure which for people with aneurysms is definitely a must. My biggest mistake was not continuing my exercise routine out of fear. So far I’m fine. Now I have a son who is 27 this month and he will have surgery soon to repair an aneurysm that he was diagnosed with in December. He had an angiogram last month which helped the doctors to see the changes from December to February and it also allowed them to see where the change was and how thin the artery wall was becoming. He is fine after the angiogram and he actually feels like the information has helped him relax as he makes decisions. We talk often and discuss his feelings and the possibility of different outcomes. He is preparing as best he can. He is the father of an almost two year and is soon adding another little one to our family. We support one another with everything and that is all we can do for now.
It’s not easy making decisions. I hope you both know you are not alone. I hope this helps a bit. Take care. I’m here if you need to chat.

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Lyd, so nice to hear from you, and that you’re doing well!

Take care, down there in beautiful Virginia: it must be lovely in the spring!

Seenie

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Hi
Finally enjoying very nice weather. Thank you. I am definitely looking forward to more outdoor activities. All will have to wait until my son’s surgery. Not looking forward to that as I don’t know what to expect but at least I will finally see him. He lives overseas and I haven’t seen him for two years come May. Hope you are well. Take care. Enjoy the spring.
Sincerely
Lydia

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@Lyd How wonderful you get to see him! Are you going to the country he lives in, or is he coming back to the States? It’s funny, every time I hear someone say overseas, I automatically think military. LOL.

Make sure he is well hydrated prior to his procedure it helps with everything from the needles to recovery. Ms. Helen used to remind me of that for the first few procedures she scheduled me for, then I was able to tell her!

It is beautiful this time of year in the South
Moltroub

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Hi. Nice to hear from you. I will be traveling as I have been vaccinated and he has not. He also has to prepare to move to a bigger house so traveling back to the US is impossible right now. As for the military, yes we are several generations of military service men and women in this family. Although he considered it he choice the civilian way of life. He current position in the Middle East is with an engineering firm that does sustainability projects throughout the Middle East. That is his passion so he and his bride who works at NYU University took a chance and really love it out there. Thanks for the water tip. I will definitely pass that information on. He is still struggling with setting a date for surgery but we are encouraging him to do it sooner rather than later. Praying he will move forward with it soon. Thanks for your good advice and for checking in. Please take care
Sincerely
Lydia

Good Morning Ms. Lyd! We too are generations of military in our family LOL. How cool is that to be employed with a firm to help the world? I am truly impressed. It must have been a huge leap to go to the Middle East away from family. Good for them! I will keep him and his family in my daily thoughts hoping he gets the help he needs ASAP. Hopefully the next time you check in, you will have been to see the grandbabies and all is well.

Safe travels
Moltroub

Thank you. We appreciate all the prayers and good thoughts. Stay safe.
Lydia

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Hi Rachel,
I think it’s been over a year since my last post, but I just saw your post and wanted to let you know that you and your daughter are not alone in this journey, it’s something everyone here has been through and you will get through it as hard as it can be to navigate. I was diagnosed with an unruptured, very small aneurysm back in 2016 at the age of 33 and underwent the pipeline stent treatment in 2017. Four years later, I’m doing great, and there is not a day in my life I don’t stop to thank god for my amazing team at John’s Hopkins. Before undergoing treatment, I waited a year, did the monitoring, and got 4 opinions. I felt mostly alone when trying to decide what to do. It was honestly not until I found the right doctor, the doctor that I trusted to manage my treatment. If it weren’t for him, I might not have ended up doing the treatment.
Best of luck to you and your daughter, sending positive thoughts!

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Restoz, thank you so much for sharing. Hearing your story is a breath of fresh air because even the medical professionals downplay or don’t understand my situation. Finding the right doctor is critical and absolutely necessary, you have to do some intensive research. I am still recovering after 16mo. from a brain stent procedure. I was told (or sold) that it was a simple procedure and can go back to normal after 2wks–which was a pitfall for me. I should have taken extra time to rest & recover. Returned to work multiple times but blood pressure skyrocketed. I still have headaches, neck pain & severe anxiety. I thought there was something wrong with me and learning that the road to recovery varies for everyone. I am very thankful for this site, it has been a life saver & extremely helpful!

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Hi Rachel. I finally made to the UAE ( Abu Dhabi). I am in a 10 day mandatory quarantine but so very happy to be with my son, daughter in law, and baby Aly. So far he looks well although very tired. He is putting on a brave face but I know and understand the worry. We begin our journey tomorrow. We have no idea what will happen but he has done thorough research and finally decided he was comfortable enough to go forward with the procedure. We are all hoping and praying for a good and speedy recovery and that he stays in good spirits.
How is your daughter feeling these days? How are you dealing with all of this emotionally? Everyday I wish I didn’t have to think of his condition or mine but I definitely feel grateful and a little less alone knowing others live well, manage symptoms, lives etc with some sense of dignity, respect, joy and love. I think what I am learning is that you will lose a little of yourself but gain a loving perspective towards others and even towards yourself. I hope you will start to experience peace with every positive step you take. I send you peace and an enormous hug. Be well. I’ll try to write back soon with an update.

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Hi just wanted to let you know that I made to UAE. In 10 day quarantine but my son moves forward with surgery tomorrow. A little nervous of course but so happy that his father and I are here. Hoping and praying for the best. :heart: Thanks for supporting us all. Take care big hug from across the ocean. I’ll try writing back soon.

Big hug to you and yours @Lyd ! I’m so happy you and your husband will be with your son and his family, what a gift! Enjoy the grandbaby, share hugs often. Sending as much positive energy for a successful procedure and outcome to your son

Hugs,
Moltroub

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I have had two angiograms. One they went through my leg artery and one they went through my wrist. Both i was sore afterwards and had to take care of the incision site. But it wasn’t to bad. I’m always nervous when I have to do any surgery or procedure that I have to be asleep.

I had 2 unruptured aneurysm diagnosed Sept 2019. I was 38 so a little older then your daughter. It was an accident I found them. I have lots of headaches and after a week long headache I was reminded that my mom had one. An MRA & angiogram confirmed. That week before I saw the neurosurgeon was incredibly stressful.
When I saw the neurosurgeon it was pretty much up to me. He was ok with the surgery or the wait and see.
The incredible stress of the not knowing if my headache was my aneurysm rupturing or just a regular headache made me realize that I needed to have it fixed. Not knowing was a million times worse then Having surgery.
Surgery was scary too but my doctor was one of the best here in Oregon. (They went through my artery) and now I am a year and a half post surgery and doing well. I was worried about stroke/dying/and going blind too.

Its a hard decision but I don’t regret it. My mom has an aneurysm but has had no symptoms of headache or anything else. So she is doing a wait and see. Since I had symptoms, it was a little easier for me to do the surgery.

I hope this helps.

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@Rachel I can’t tell from your post how big your daughter’s aneurysm is. That is really a big part of the decision-making process.
I found mine in 1998 and watched it until 2014. It was 4mm when it was first discovered, and not in a good place for surgery. They told me the 1% per year, too. Except that when you reach the age of 60 the risk skyrockets. They couldn’t learn much about brain aneurysms because they usually only found out a person had one when it killed them.
If it is small and her pain is manageable by keeping a healhy blood pressure, etc, then I say wait until you can’t wait.

Mary

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Hi Rachel, I am sorry to hear about your daughter been diagnosed with a brain aneurysm.

I may be older than your daughter, but as many others on this site, we have had brain issues, ie, aneurysms, ruptures etc.so we all understand the issues that you and especially your daughter is going through.

Although I had a brain blead five years ago (and aneurysms I didn’t know I had), I still have another aneurysm on the opposite side of my brain, which the neuro surgeons are watching. They did want to operate over 4.5 years ago with a stent, but because I was still getting over the first op I delayed it. My aneurysm is still being checked via an MRI, but every 5 years after last year, due to it being stable for over 2 years.
Due to her age of 26, if she is fit and can do what is necessary to control it, your daughter may prevent her aneurysm from rupturing, or it could even help her especially with her age.

Please tell her from me not to worry, it is surprising the amount of people who have this and survive, but not to worry, be realistic, but don’t over do it either.

I guess, as for me, it is finding the right balance and action on each individual, and what will work for your daughter.

If I can offer you any advice, do as much research as you can, and double check.

Good luck.

Note to Survivor2 and members:

Thank you for your wonderfully supportive message to Rachel. Although we haven’t heard from her lately, I’m sure she will be grateful for your kind and encouraging words. In your post, there was also some information about nutritional advice and hints, which we call complementary therapies. Because we like to keep all complementary therapy information together in one place, we have taken that out of the post and made it into a standalone post in the Complementary Therapies sub-category. That way it can be found easily by others, because the subject line will be found by the search engine.
*Again, Survivor2, thanks for your wonderful contribution. *

Seenie from ModSupport.

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