Anterior Communicating Artery (AcoA, Acom...) Aneurysms

Hi,

One week ago, after an MRI and then an MRA, two small aneurysms were discovered on my Anterior Communicating Artery, one leaning anteriorly and the other posteriorly. The MRA states that all of the blood flow is running through the A2 segment of the Anterior Cerebral Artery, since I am missing the A1 segment of the Anterior Cerebral Artery and the A2 segment looks fenestrated as well.

In addition, the MRA could not rule out MS or other demylinating diseases, which was the initial reason we requested the MRI, after a complete vision loss in my left eye and since my sister has MS and Lupus.

So, I am in a little bit of shock right now and I am hoping that after the CT Angiogram I will have tomorrow, we will find out that this is all a dream and the other two tests are incorrect. We also hope that when we meet with the neurologist, he will do a spinal tap and rule out MS and all other demylinating diseases.

From what I have read, even small AcoA aneurysms are a high rupture risk, men have a higher rupture risk than women for AcoA aneurysms, AcoA aneurysms rupture at a younger age, and an anterior leaning dome and multiple AcoA aneurysms put me at greater risk as well.

It would be very helpful if:
1.) Anyone can tell me what they think my rupture risk level is.
2.) Anyone who has one or multiple AcoA aneurysm(s) can tell me their experience.
3.) Anyone can tell me what treatment options are best for small AcoA aneurysms and if new, safer, less invasive treatments options exist for this already high risk area for surgery.
4.) Anyone has an aneurysm and MS or another demylinating disease.
5.) If there is a neurologist on this site who can give me their expert opinion.

Thanks so much and my positive thoughts, prayers and best wishes are with all of you!

Mike

Michael...welcome..and, forgive my slowness...

I have a lot here because...I had a PCOM aneurysm...resulting in "loss of ACOM"...which is a long,. intriguing/ frightening story... to come forward later on... so to your questions...

1) no on risk levels...I had no aneurysm in the ACOM...for massive ruptures...of the ACOM for treatment on the PCOM...commonly an "oopsie / similar"..

2) I cannot tell you about an aneurysm of the ACOM...based on # 1)

3) I do not believe in the marketed minimally invasive procedures... because they are based on the qualifications of the providers...

4) I have a long-term friend of MS...who does not have, did not have, an aneurysm...the "background" of it is essentially the area/region as Parkinson's Disease and AD (she lost her hubby to apx a year ago)...

5) You likely will never find a neurologist or other doctoring on this site... who will give an expert opinion...and, realistically, I have no expertise....educationally or licensed...

P. S...the only thing I have learned are the terms ...likely and presumably ...in my records...

Well, at least, I pretend to have learned those...relating it to a neuro-doc opinion of their "studies"... of images of brain tissue and arteries...

Conversely, are my strong prayers for each of my peers here...for quality care...

Thanks Patioplans and Eduardo for your responses

Yes, I consider myself very grateful that they found these aneurysms pre-rupture. In addition, missing the A1 segment of the anterior cerebral artery increases my stroke risk, so I am very grateful I found out about this at a relatively young age (47) as well, because otherwise, with my personality, I probably would have overdone things physically and had a massive stroke or rupture later in life. So, I am very grateful that I can do something about my lifestyle in terms of taking it more easy and hopefully treat the aneurysms safely.

It seems unlikely that there are neurologists or neurosurgeons on this site, so until I can be seen with either of these doctors, as I have an HMO, anyone with experience on the AcoA aneurysms and treatments, especially for small and/or multiple aneurysms on the AcoA would be so helpful at this point. ANYONE with Anterior Communicating Artery Aneurysm experience sharing their experience would be amazing. Also, members experience with treatment options of AcoA aneurysms, especially small ones, will help me make a better choice once the neurosurgeon provides us treatment options for my particular case.

Thanks, again, Eduardo and Patioplans, and I will say my prayers for you both for things to keep getting better on your life paths and that you continue to enjoy every day to the fullest!

Michael...thanks for your response...you are blessed for what has been diagnosed...and, for you to make your decisions on treatments... You may want to review under the 'resources' section...the strokeSTOP and view the arteries and the areas they supply...it is copyrighted by Umass.edu and American Stroke Association....it is on the anatomy / functions...and may help you in questions when you see the neuro-docs...who will be explaining it and the various procedures.

Are both the left anterior cerebral artery (ACA) and right ACA missing their A1 segments? (and bear with me, if I am not interpreting correctly)...

Patioplans,

Thanks so much for the research suggestions...I'll check them out for potential questions and understanding and I'll trust the knowledge and experience of the doctors...we will get a second opinion though as a sanity check.

As far as I know, the left A1 segment of the anterior cerebral artery is missing and all of the blood flow is going through the right, A2 segment, which is causing aneurysm formation on the anterior communicating artery, AcoA in the Circle of Willis. So, this situation makes surgery more risky because of the increased blood flow all on the right side in an already intricate area, but also increases the risk of aneurysm formation and rupture.

I'm learning as I go...I wasn't even completely sure what an aneurysm was until a few weeks ago lol!

Thanks Again!

Michael...thank you...thee is data on the variance of the formations of our arteries...so when we look at images, explanations, stats...they are always on the basics...and, we do not know the perfection or variance of ours until/unless the imaging is done...and, you did have that done...

In my research, the general/usual artery structure is apx 80% and 20% of us can/may have some variance(s)...Prayers that you are getting all your diagnoses and recommendations so early for your decision(s)... please keep us updated...

A lot of us did not know the term 'aneurysm'...



Michael Kirk said:

Patioplans,

Thanks so much for the research suggestions...I'll check them out for potential questions and understanding and I'll trust the knowledge and experience of the doctors...we will get a second opinion though as a sanity check.

As far as I know, the left A1 segment of the anterior cerebral artery is missing and all of the blood flow is going through the right, A2 segment, which is causing aneurysm formation on the anterior communicating artery, AcoA in the Circle of Willis. So, this situation makes surgery more risky because of the increased blood flow all on the right side in an already intricate area, but also increases the risk of aneurysm formation and rupture.

I'm learning as I go...I wasn't even completely sure what an aneurysm was until a few weeks ago lol!

Thanks Again!

Thanks again Patioplans....fingers and toes crossed for good news for treatment options from the neurologist and neurosurgeon. And, hopefully some folks on this website can give me their experience with anterior communicating artery aneurysms, both ruptured and unruptured size, etc.

Peace and prayers with you!

Michael...we've had a number with ACOM... and, I pray you will have good responses....

Mike,

If you look at my posts over the years I have written quite extensively about my wife's ACOM rupture and subsequent repair. The best news is that surgery today is quite a bit better then it was in 1994 as they used different materials back then which cause most of her difficulties today. Sadly it's a choice of living or dying when you boil it all down. Despite my wife's problems she praises God she was allowed to continue living. Best wishes and God Bless!

Ed Dunlej

Michael - good for your in researching information! You’re correct in assuming that you will not get medical advice here, personal experiences perhaps. However as Edwardo so eloquently put it - check with your doctors. There are way to many variables for a licensed medical person to give on a support site.

May I suggest looking at the BAF website (link top left) and going through their articles or webinars. Also try creditable sites like webmd. I often go to NIH to see what the scholars are writing about. Also if you’re looking for a second opinion, perhaps you can head down to the Barlow Clinic in AZ. A lot of people have recommended it on this site.

Good luck and I really hope members who’ve had ACOMs chime in

Michael,
I hope I can be of some help to you. I just had 2 ACOM aneurysms clipped in Nov 2014. I am 34 yrs old and went in for an MRI/ MRA just as you did. My neurologist was checking for MS since I was having tingling and numbness randomly sometimes lasting for a week, with increasing headaches (I was never one to have headaches much) Needles to say, the results came back with 2 mm aneurism in ACOM and it also stated on the report that is could be a vascular malformation. I went to the neurologist for follow up and he didn’t seem too concerned. He said I could have been born with this issue. I felt the need to check further. I had 3 opinions from 3 different top Neurosurgeons. Had CT angiogram, the aneurism was really there. It was tiny but It was truly there! All stated to take the “watch and wait” approach. I agreed and stuck with the one surgeon I really liked. I went back in one year for another CT angiogram…and it grew to 4.2mm in 1 year! The surgeon said it was an aggressive aneurism and I needed to get this taken care of right away. He said he would try to coil it, but that it may not work because of the shape. After some thinking, I decided to try the less invasive coiling approach…since I have 3 young kids at home! Went to the hospital and went under for the procedure, only to wake up to the surgeon letting me know that he can not coil this aneurism. It even has a sister aneurism attached to it and the coils will not hold in this situation.
I went back for a consult for the clipping. Ended up agreeing to it and set up my surgery! I was scared to death to have my head cut open, and worried I would lose memory or function of parts of my brain!!! My surgeon stated to me " you have a 95% chance of coming out of this just as you are right now. The other 4% is risk of infection, and 1% for bleeding and other complications. If you let this stay and it ruptures,you have a 60% chance of dying, a 30% chance of living with serious disabilities, and 10% of it never rupturing!"
I had my craniotomy on Nov. 17, 2014. He found a 2nd aneurism shadowing the first one which was not visible on any CT angiograms which was 4.3mm and very thin walls. He said that one would have ruptured within 3 months! The craniotomy saved my life and it is worth living everyday not worrying about this ticking time bomb in my head! I was fully recovered and cleared from my surgeon after 6 weeks with no side effects from surgery. I am grateful to this surgeon and his magical hands! ACOM aneurism are most likely to rupture since they are in such a tiny area and have no room to grow…they usually don’t make it past 5mm.
I hope this helps you out…good luck on your journey!

I had a rupture in December of 2014 (9 months ago) at the anterior communicating artery. It bled for 5 days before it was found. Docs said I had the flu until I insisted that I thought something was wrong with my brain. In the ER they saw "something" on a CT scan without contrast, they kept me overnight and in the morning did an MRI with contrast and saw it was still bleeding. It was coiled with 10 coils and I went home after 10 days in ICU. In June (3 months ago) I had a second coiling (3 more) at the base of the first for a "residual annie." I am back to work (went back in April). The second surgery was easy because it had not ruptured. I still have headaches and get tired easily but I am told that's due to the bleed and brain healing time. I am VERY blessed to still be here and be able to walk, talk, think and work. Yours has been found per-rupture, so you're going to be OK. I do not have MS or underlying degenerative dx, but I did have lumbar fusion a year ago (6 months prior to rupture). So still recovering from all of it. Again, I am really blessed to be alive. Since mine is in the same place as yours, I thought I'd share. You're doing all the right things and you are very fortunate to have found this before it ruptures!

Hi Mike,

2/28/2012 was a normal night for me that is until I had a terrible headache - to make the story short, I ended up at a local ER where after hrs they finally did a CTscan and discovered a major bleed I was then transported to a major University hospital where they not only discovered a ruptured annie on my anterior comunicative artery but also a second one (mirroring the 1st one) I was coiled for the ruptured annie and was in ICU for 6 weeks, 2 months later we decided to go ahead and coil the 2nd one - I wasn't willing to live with the fear of another rupture, while it was supossed to be a "routine" procedure turned out to be a nightmarish process, the Dr punctured my artery - creating another major brain bleed, after 1hr or so trying to control the bleed they were able to coil my 2nd annie, but I had more damage from my 2nd bleed than my 1st... 3 yrs later I'm almost back to normal, I had PT, OT, speech therapy for about 9 months I still have minor memory problems but by the Grace of God I'm alive to take care of my family.

You are lucky it was discovered before a rupture there are many different treatment options available before a rupture damages your brain!

if you smoke QUIT!! be patient and ask your doctors all your questions, no one can really predict the risk of rupture, if you need to get a 2nd opinion but If I were you I'll get my annies treated soon it is too stressful for you and your family to have a time bomb in your head!

Good Luck to you!!

Hi Mike,

"I had my ACOM aneurysm clipped on 5/26/15. Dr said it was about 3-6 months from rupturing-extremely dangerous! They look at size, shape etc. mine was about 5mm with a wide base and a daughter. I would just suggest that you go to a doctor that has a ton of experience with this type of aneurysm (my dr has done over 800 with a 2% complication rate. I drove 2 hours to see him) and works at a large teaching hospital. Make a list of all your questions, and always try to get a second opinion. Good luck with your angiogram tomorrow, and please keep us updated!

Thinking of you,

Joan

Thanks so much Ed Dunlej, Moltrub, Michelle, and Debbiepf,

This information will help so much!

I will be sure to research the webinars and NIH studies and will keep the clinic in mind for a second opinion...Ed, I will plan to read your wife's story as well. Thank you Michelle and Debbie...I'm so glad your situations worked out and that you are here safely with us now...your stories give me hope and they emphasize the seriousness of this. Sorry you went through all that you went through!

Your help will give me courage to insist on a Cerebral Angiogram, since it seems the size and wall thickness can be under or overestimated with a CT Scan and even a second aneurysm might be missed. I'm so glad both of you were able to get resolution to your aneurysms and live your lives fully, with much less worry. If they want me to watch and wait, I want to be sure to have an accurate baseline or preferably take care of it right away if its possible.

Thanks Again, so much!

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Hi Michael, I had three clippings done during two brain surgeries the first one was a snap I recovered quickly and was back at work in 8 weeks the second one wasn’t as easy the walls were very thin and my surgeon had to put gauze on it before the clip and it left me with nausea and headaches for a few months but that was a small price to pay when I consider that it would have killed me. The time between the two surgeries I was always worried whenever I got headache or felt a little off centre thinking this is it!
So Michael I hope you make the best decision for yourself but don’t let fear stop you.

Thank you so much Vicky and Joan...I just saw your posts.

So glad you are back to normal Vicky and sorry for all you went through. Glad yours were clipped Joan. I am going a little nuts thinking about these stupid things in my head...one moment, I'm trying to meditate and enjoy all the beauty around me and the next moment I'm obsessively researching lol.

I'm not sure I can afford the best of the best doctors, since I will probably be limited to my plan. Definitely, based on your responses, I will be sure to get a second opinion.

Thanks again and I wish everyone who responded and everyone on this site prayers for joy and for things to just keep getting better!

Hi Mike,

I'm sorry you are going through all this! In many ways we are in the same boat with all these questions.

My husband also had vision loss on his right eye (it thankfully came back), which took us to the emergency room, where a CTA was performed and two aneurysms in the AComA were found. One was 6 inch multi-lobular, the other a small 2 mm. We were transferred by ambulance to a larger hospital where we saw the interventional radiologist who performed a coiling procedure. This all happened within a period of 3 days. My husband was in a state of panic and did not want to talk to or see anyone about this. We did not consult with more than one doctor. All I knew was that coiling was a less invasive procedure and based on the LIMITED research that I did in a period of 2 days, a less risky procedure. All I had ever heard about aneurysms were about friends or family of friends who had died due to a ruptured aneurysm. I wanted it taken care of right away, especially because the feeling I got from the doctors we saw at the hospitals indicated that this was urgent.

This was a mistake. We needed to consult a neurosurgeon as well as an interventional radiologist. I don't want to frighten you more than I am sure you already are. We are lucky when we know ahead of time and can deal with it, and almost everyone I have followed that is treated ahead of time does VERY well. In our case, however, the aneurysm ruptured during the procedure. My husband was in the hospital for 51 days, most of this in intensive care. After this experience, we still do not know what to do about the second annie.

This is what I have learned since regarding coiling vs clipping vs watch and wait.

1. Consult with both an interventional radiologist and a neurosurgeon. What follows is based on what I have read, and I am by no means a medical professional.

2. Coiling is less invasive, but not without risk, and some aneurysms are not good candidates for coiling. That said, if all goes well, you should be released from hospital after a 2 day period following coiling.

3. Coiling, however, will require follow ups via MRI/MRA or preferably angio, as coils can sometimes compact over time, requiring further intervention (another coiling procedure).

4. Clipping is more invasive, and thus seems to have a higher risk, but in the event of an intra-procedural rupture, less risky than coiling as the surgeon has a greater ability to contain the situation.

5. I am having an issue with the question of "watch and wait". Many doctors will not touch an aneurysm that is very small 2 - 3 mm. These apparently have a risk of rupture of 1% per year. From what I have read, it seems that this is the case even in the AComA, where you are right the risk of rupture is higher (I am guess because of the small size of the artery). Some studies link the risk of rupture to growth. So, would be more concerned if they note that the aneurysm is growing. There are people who have had aneurysms this small coiled or clipped, but because of the size, the risk of intra-procedural rupture of aneurysms this size also seems to be higher.

6. This study was helpful to me. (It discusses risk factors.) Take a look at it and share it with your doctors.http://stroke.ahajournals.org/content/39/5/1501.full.pdf

7. Make sure that your blood pressure is under control. I think this is the most important factor we might have some ability to manage. I have also read that aspirin might be beneficial in preventing ruptures, but this is another thing you will want to ask your doctor.

8. Do your research and stay calm. Be proactive, but also know that many of us might be walking around with aneurysms we don't know of, and which will never rupture.

9. I have family that have MS. My husband's loss of vision was related to a TIA, the result of plaque that dislodged and blocked blood flow. He recovered from it. My sister-in-law's sister had vision loss that resulted in a diagnosis of MS. She was diagnosed over 20 years ago. Is doing very well. Retired recently and is in amazing shape. Knock on wood.

10. Please get back to us and let us know what your doctors suggest. We are in a similar boat and we can learn from your research as well.

Be well. My prayers and thoughts are also with you, as are my best wishes for a long and happy, healthy life.

Naisy

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Joan, which doctor did you see? Which hospital? We are looking for 3rd, 4th, 5th opinions!

Joant said:

Hi Mike,

"I had my ACOM aneurysm clipped on 5/26/15. Dr said it was about 3-6 months from rupturing-extremely dangerous! They look at size, shape etc. mine was about 5mm with a wide base and a daughter. I would just suggest that you go to a doctor that has a ton of experience with this type of aneurysm (my dr has done over 800 with a 2% complication rate. I drove 2 hours to see him) and works at a large teaching hospital. Make a list of all your questions, and always try to get a second opinion. Good luck with your angiogram tomorrow, and please keep us updated!

Thinking of you,

Joan

Hi Naisy,

I agree with everything you said-I'm so sorry that your husband had such a difficult experience. My first opinion at a highly respected hospital in Philadelphia said that he wanted to do an angiogram and if he could coil it at the same time he would. I ran from there. I wanted to hear the results from the angio and then discuss options with the doctor. I drove 2 hours to the Johns Hopkins Aneurysm Center and saw the head of the Center-Dr. Tamargo. He is incredible!! They work as a team. I had the angio, results were discussed with Dr. Tamargo, who is a neurosurgeon, and an interventional radiologist. I met with him the next day, and he told me that they both felt that clipping was my only option. He told me that I shouldn't wait longer than 3 months to have it done, as it was starting to deteriorate! I had surgery within 3 weeks. The whole experience at Hopkins from beginning to end was exceptional. Dr. Tamargo saved my life!

Joan