Hello, My 18 year old daughter was just diagnosed with an aneurysm

My daughter was just diagnosed on May 13th with a 2.7 mm anterior communicating artery aneurysm. They told her because of her family history, she does pose a greater risk for rupture. Her grandfather passed away at 44 from a ruptured aneurysm, her great grandmother also passed from a rupture and she currently has an uncle who was recently treated for a rupture. I believe he had the Clipping. Because of her family history, they definitely wanted to at least do an Angiogram, which we agreed to. Then she told her after the Angiogram, she had three options, the wait and see approach, Clipping or Coiling. My daughter just keeps saying she wants it gone. I just feel overwhelmed with information from google searches that I am at a loss. I know her aneurysm is small and I keep reminding her that it is good that it was found early, but all of the information that I found from googling just has me overwhelmed and more confused as to what might be the best course of treatment. The family history is on her father's side and we know about the history, but my husband's father passed when he was only 2 and my husband has not had much contact with his father's side of the family growing up. We found out about his half brother and his grandmother through another family member, so we don't have much personal experience with this illness. Well, until now. I have to stay strong and put on a brave front for my daughter. She needs me right now to not fall apart. I would appreciate any information anyone could share with me so that we can be more informed as we proceed down this path.

Sherry...welcome and wish it was for every other imaginable reason!

You are blessed w/time, due to your daughter's age and size of aneurysm...which gives you time to research to make the best possible decision...I am not suggesting waiting a long time...just that you are blessed w/time to learn/decide (for both of you!) for such a tremendous decision.

On the main website here, there is a list of resources, including two books; one by Dr. Eric Nussbaum, and one by Dr. Spetzler (sp?) and his co-author.

Here, under Brain Resources (similar?), Moltroub posted a basic brain brochure from a rehab center in FL that may help in seeing the brain...not just the artery of the aneurysm.

In addition to all this, you will have all the suggested/offered procedures explained / recommended by the neuro-docs you have seen...if not already.

One thing to ask on coiling, are the known potential f/u's and repeats/additions over time.

We have members who have had the ACOM treatment(s) and so expect you will be getting great feedback.

Hi Sherry

I was lucky to have found out about my annie incidentally and was blessed with the time to research. Yes, it is very overwhelming. My annie was a bit bigger and also on the anterior communicating artery. The first neurosurgeon I saw thought I could just have it coiled and referred me to a doc that specialized in coiling. He had me do an angiogram to get a better look. What we found was a wide necked (think Mickey Mouse) annie. So even though he was perfectly comfortable doing the coiling, he referred me back to the surgeon to discuss clipping.

One concern was my age. I was 38 at the time. Coiling was around for approximately 15 years then. There was no long term stats on the coils. Will they stay in place another 40-50 years? They don't know. So, I researched the top surgeons in my state. I made appointments and I interviewed them. I went in with a list of questions. Luckily my husband was able to come with me, so we would "compare notes" after the appointments. After spending well over a month reading, researching and meeting doctors, and I decided that clipping was the best option for me. I was lucky to have a world renowned surgeon in my area and I came through the surgery and recovery with flying colors. I just celebrated my 2nd Annie-versary a few weeks ago.

I would start researching doctors in your area, or surrounding areas if you are willing to travel, and start getting second, third and fourth opinions. I wish you and your daughter all the best.

Terri

This post on watch and wait people might be helpful and I think you will find it an interesting read. http://www.bafsupport.org/forum/topics/unruptured-aneurysms

If it were my daughter, I wouldnt want her going though surgery for such a small aneurysm because it may stay small and never be a problem. I understand that your daughter just wants it gone, but she's 18 and doesnt really understand the potential risks of surgery. My ruptured aneurysm was on the ACom artery, I was 44 at the time (most ruptures happen after 40 years of age) and I was a smoker with uncontrolled high blood pressure for years. If I'd known it was there, I would have been better about my health.

Smoking and high blood pressure are both big risk factors for rupture but my aneurysm was much larger than hers as well. I have a 4mm being watched and dont plan on doing anything unless it gets much larger. I just dont think it's a good idea to go poking around in the brain unless it is absolutely necessary, but that's just my opinion, and this is from someone who has already survived a rupture, severe sah and severe vasospasm that the doctors didnt think I would survive. people who have had a rupture are at greater risk of another one, but I chose to give up smoking and get my blood pressure under control instead since it is only 4mm. I've learned to live with it, I know it's there but mostly now I just dont think about it until the next angiogram to check on it, and it hasnt grown in size since it was discovered 18 months ago.

You do have time to consider this, so dont jump to any decisions and give it a lot of thought. Watch and wait is commonly recommended for very small low risk aneurysms, they don't do that if they think it is too large or high risk, they just keep an eye on it and then if they think it should be treated, they'll recommend that avenue when and if the time comes.

Hi Sherry, it may sound strange to hear this but how wonderful it was found! You have the blessing of being able to educate yourself about aneurysms and decide on the best way to fix it. My father has an aneurysm so I know how it feels to be a family member of someone with one and how you wish you could fix it yourself!

And yes, it's a small one so that's a positive as well. Research all your options, join groups on here so you can read stories from people. You will be very knowledgeable about it all before too long! You are in the position of being able to take your time to decide what will be the best way to go forward. And this site is so valuable for comfort and is a wealth of knowledge.

Hi,

I was in a similar situation, but I was diagnosed last year at age 34. Mine was 4mm and I had a family history. No other risk factors- I have never smoked, I was otherwise in perfect health. I could have waited, but like your daughter, the fear of having my brain rupture and doing nothing was too much to bear. I was forced to wait 3 months before I could have the surgery, and it was torture.

I'm happy to say that I had a great outcome from clipping surgery. I believe this is in part due to my age, my very careful attention to nutrition before surgery and care afterwards, and most importantly, due to a really good neurosurgeon. Make sure the doctor has a good track record.

I woke up after surgery and wanted to get up and dance. The relief is immeasurable. Its a personal decision, but I totally get why she would want the procedure. And most of the time, it goes really well. Stay positive and try to understand whatever decision she makes. Even if she wants to do it, she'll probably waver a few times along the way. Good luck!

Thank you. She is scared to death. I had to take her to the ER last night because she's been having pain urinating and she's had it for a few days, but didn't say anything because she said she read somewhere on Google that antibiotics can rupture an aneurysm and she didn't want them giving her antibiotics. I have no ideas where she read that but she was in so much pain from ignoring the early warnings of a UTI because she was in fear of the aneurysm. She is leaning towards coiling but I have been reading that for younger people, clipping may have a better prognosis. Do you mind if I ask how you came to the decision to do clipping? Was Coiling an option for you?



Kit34 said:

Hi,

I was in a similar situation, but I was diagnosed last year at age 34. Mine was 4mm and I had a family history. No other risk factors- I have never smoked, I was otherwise in perfect health. I could have waited, but like your daughter, the fear of having my brain rupture and doing nothing was too much to bear. I was forced to wait 3 months before I could have the surgery, and it was torture.

I'm happy to say that I had a great outcome from clipping surgery. I believe this is in part due to my age, my very careful attention to nutrition before surgery and care afterwards, and most importantly, due to a really good neurosurgeon. Make sure the doctor has a good track record.

I woke up after surgery and wanted to get up and dance. The relief is immeasurable. Its a personal decision, but I totally get why she would want the procedure. And most of the time, it goes really well. Stay positive and try to understand whatever decision she makes. Even if she wants to do it, she'll probably waver a few times along the way. Good luck!

My aneurysm was not in a good location for coiling. But regardless, I would have chosen clipping because it is more “permanent”. I want to have children, and not worry! The surgery really wasn’t that bad. More than anything- bein younger and having fatigue for a few months was very frustrating!
Any other questions please let me know… Happy to share all the gory details:). Ps - they only shaved a quarter inch of hair that’s completely hidden:)

Kit...thank you for your sharing...My L PCOM aneurysm was coiled...post procedure, my ACOM is "not present"...tho it was present in the diagnostic records... I am always so pleased when I hear of your open surgery successes... we do have some for the coiling...tho there is not true history / stats...

I had far more than a 1/4" of hair loss...viewed in a diff manner than yours...as it clogged the drain, etc...

Thank you for your input and prayers for your continued success.

Pat

Kit34 said:

My aneurysm was not in a good location for coiling. But regardless, I would have chosen clipping because it is more "permanent". I want to have children, and not worry! The surgery really wasn't that bad. More than anything- bein younger and having fatigue for a few months was very frustrating!
Any other questions please let me know... Happy to share all the gory details:). Ps - they only shaved a quarter inch of hair that's completely hidden:)

Hi, my name is Lacey. And I can relate to your daughter because I had a ruptured subarachnoid aneurysm and I was only 19 when it happened. I was rushed to the hospital where I went into surgery and got a coil done. I spent 2 weeks in the hospital and that’s not long due to the fact that I was young and I had a pretty fast recovery. I am now only 22 years old. But since I know what I know now and I’ve experienced what I went through, I would get the coil done. It’s only about a 30 minute procedure and there’s no pain or anything. If I would have known that I had an aneurysm before it ruptured and what I would have went through, I wouldn’t even second guess it. I hope that I’ve helped you and I’ll be happy to answer any questions! :slight_smile:

FWIW an anterior communicating artery aneurysm carries an equal or greater risk of rupture than posterior circulation aneurysms and those <4 mm carry a higher risk of rupture than those larger. That is a conversation you should have with your team, but I'd consider this a high risk lesion with what I know about it, There is obviously more I don't. Clipping or coiling? I wouldn't worry that one too much. That really is a decision that will be made at the time of surgery more often than not. I have even seen it change during surgery. Its more important to have a surgeon that you can trust to make the best decision for his patient.

tj1, can you explain why to me? this makes no sense, since as aneuryisms get larger the walls tend to get stretched more and thinner so I dont get how a smaller aneurysm could be higher risk for rupture than a larger aneurism where the wall is thinned and weaker. where did you get his information from?

tj1 said:

and those <4 mm carry a higher risk of rupture than those larger.

Uh I learned it in school. But I will share one of MANY Journal articles on the subject:

http://stroke.ahajournals.org/content/44/11/3018.full

The anterior communicating artery is a different beast. There is a huge difference between posterior circulation aneurysms and anterior circulation aneurysms as well. Size is only one of MANY considerations. Its why we try to keep sites limited to sharing of personal experiences and sharing of resources and not painting things with an overly broad brush thinking we know more than we do...................

Sharon, tj is right. It is the same for AVMs -- smaller ones are known to have a higher rate of rupture.

That being said, if I had been following this discussion as closely as I should have, I would have shut it down sooner, because at some point it slipped from people describing their own experiences to advising someone else which treatment she should pick for her daughter. No one here has the information or expertise to do that. Sherry, please understand that everyone is seeing this situation from their own particular viewpoint. It's like the fable of the blind men and the elephant -- each person is describing the part that he or she is familiar with. The only people who know the whole elephant are your daughter's medical team, and they alone can help inform your decision. I hope it helps that people have positive outcomes from all three avenues. Best wishes to you and your daughter!