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

General
21

Mike...

I forgot to mention...check out member Kennedy Kirsch and view her youtube...if you have not...

It is tremendous...she is a 17 year old who she and her parents researched extensively for her for/their decision on open surgery.

Altho her ophthalmic (optic nerve area) is different than ACOM, they are in close proximity off the ICA. The ophthalmic branches off the Ica, followed by the PCOM (mine) and AChA, then the ICA bifurcates to the MCA and ACA...and the ACOM connects the Rt and Lt ACAs...And, as I understand it, your ACOM has a different congenital formation.

Regarding open surgery, I also suggest you may want to ask the neuro-docs about any potential bypass if you have open surgery...My question is from a member, some time back, telling me about a bi-pass done on her during her aneurysm treatment... I have no memory of which artery.

What little I think I know/comprehend about my ACOM..."not present"...is its purpose in the circle of Willis. Typically, if either side (left or right) fails to get its normal flow (stroke or whatever) the ACOM brings forth the blood from one side to the other...that little back-up system for all the ACA branches.

One more thought/suggestion..,in your decision making, is asking your neuro-docs about what, if any, drugs (anti-coagulents or?) you will be on after, and for how long; and if you will be placed on any for any days/weeks prior to the procedure. That has seemed to vary much by members. And, great to ask before it is prescribed after your decision.

Please let us (me?) know about your viewing of Kennedy's youtube...I forwarded that to a number of family/friends. By the way, I had coiling...and, I did present my 11th anniversary last March f my pendant...that has become my walk-a-thon (truly)...a miniscule comparison to Kennedy's youtube...

Prayers for your research and decision...

and, that you will remember I can only share my experiences and records/images...I have no expertise...and can only suggest potential questions for your neuro-docs.

patioplans

P.S. re: Kennedy's youtube...the MD neurosurgeon has authored a book...that is listed on the one BAF site here... a/w/a another one by a neurodoc in Michigan.

I personally knew a survivor of Barrow; she was in her 70's when she had her rupture and did live for almost 8 years and her 81st birthday. I was introduced to her by a neighbor of hers who was a classmate of mine...and, at a reunion, he had learned of mine. He called me when she was on her way to ER for questions for her children who were flying in to AZ.

22

I have 3 aneurysms, one originally thought to be on my right posterior communicating artery that turned out to be on my right choroidal (I think that is how you spell it) artery. This aneurysm was about 16 mm the other two are small. Invasive surgery seems to be determined by the size of the aneurysm, my larger aneurysm has been coiled by an operation via my femoral artery. I believe that this type of operation is the least invasive of all brain surgery and the recovery is really quick. From what I can gather the risk of operating on small aneurysms is quite high and so most small aneurysms are often put on a watch with regular MRI scans in order to monitor growth and/ or changes. In England that means a scan every three years which I believe is based on the type of risk small aneurysms impose. As I live in England I cannot help with your questions of cost of operations but I hope the rest. Of this information helps. I feel really lucky that my aneurysms have been found as I am sure that the knowledge of them and the constant monitoring of them is key to the prevention of a bleed.

1 Like
23

Hi Mike

Find below a link to the most comprehensive study ever done on Un-Ruptured aneurysms, this is used by Neuro specialists worldwide when reviewing risk!

Hope this info helps you, I have 5 of these things, 2 have been coiled and stented, the other 3 remain untouched.

If they can be treated by endovascular means, then that would be my personal first choice, before open surgery.

Your specialist may also recommend a wait and see option with re-scans every year!

These things are different in most cases, so there is no one fits all response to them.

Consult with both a Neuro surgeon and a Endovascular surgeon, then decide!

Regards

Martinc

50-nejm199812103392401.pdf (183 KB)
24


I am so glad to hear, Joan. Thank you. We have been in touch with Johns Hopkins. It is just a matter of getting my husband there. We are fortunate to have good insurance, and I think they will cover, but we need to verify. I think it is crucial for hospitals to have a team approach and provide their patients with options. Most don't seem to have this.


Joant said:

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

25

Dear IrisD, PatTeeVee, Joan, Naisy, Patioplans, Helen, and Martin C., and everyone,

Thanks so much for your thoughtful, inspirational replies and I'm so sorry for anyone who went through allot of suffering and recovery time and my thoughts and prayers are with everyone for things to keep getting better and for a long, joyful life.

This all helps me so much and I am so grateful for this community! I am still waiting for my CT Angiogram results...seems I was a bit optimistic with the turnaround timeframe...they were in last Thursday and the doctor is still verifying them...things are moving fast people tell me, although everything seems slow motion to me lol!

Naisy...I am going through what you and your husband are going through right now, so I can imagine this is a very difficult decision for you and my thoughts and prayers are with you for the best possible outcome. I imagine you don't want this aneurysm on the AcoM, to watch and wait, even though it is small. And, at the same time surgery risks might be high. I am hopeful that my CT Angiogram will reveal that one is larger, so I am a better candidate for clipping that one. However, if I am missing the A1 segment, this increases bloodflow, making risks during surgery greater. I will check about bypass and anticoagulants per and post surgery. Hopefully, the CT Angiogram will show that I am not missing this segment. Have you considered a Cerebral Angiogram? Perhaps, you have already had one. I plan to persistently request one be done, especially if they want to watch and wait for mine. I want the best baseline possible. Even pre-surgery, I want the best image possible.

We are approaching the end of the year, time to choose our health plan in America and new coverage and plans will begin January 1, so all of you have inspired me to review the plans carefully for the best doctors and options, hopefully to even go to Johns Hopkins or the Barrow Clinic, and to minimize the maximum annual out of pocket expense. I feel grateful for this, becauue I will get a sense for how the HMO is treating me and my confidence level in the doctors and I can make a change if I need to do so...I am already leaning this way so I can get the best possible care!

I will also check out Kennedy's video and the study mentioned and the other research on this site.

Again, I am so grateful to all of you for sharing your experience, strength and hope and I look forward to hearing from anyone else who has experience with Acom aneurysms. Again, all the best wishes for things to keep getting better and a joyful life!

26

Hi Martin,

Again, thank you so much for your sharing your experience, strength and hope. I am so glad two of yours were colied successfully and I will pray that the others you have show zero change during your next scan.

I appreciate your mentioning the largest study that most neurosurgeons use, and in fact, this study is a cause of some of my anxiety. Hopefully, I will have a neurosurgeon who will look at size, location, wall thickness, hemodynamics and bloodflow/pressure in my particular AcoM region/anatomy, etc. and not dismiss the seriousness of the aneurysm based on small size alone.

From the research I have done on the National Institutes of Health website, several studies point to the fact that even small aneurysms on the AcoM have double the rupture risk of other small aneurysms, similar to large posterior aneurysms. In addition, NIH studies point to the fact that AcoM aneurysms rupture at a younger age, more men that women rupture, and an anterior leaning dome is more prone to rupture, a thin wall is more prone to rupture, etc.

Even the proportion of AcoM aneurysms in the study you provided makes me wonder....what is the reason that the study mentioned only has 10% unruptured AcoM participants, although AcoM aneurysms make up almost 30-35% of all aneurysms? To me, this points not only to the fact that AcoM aneurysms were under-represented in this study, but that perhaps the reason they were under-represented in a sample of unruptured aneurysms is that most of them rupture! I don't mention all of this to be argumentative. I simply think that perhaps this study is not perfect and perhaps dated, and perhaps the information I have discovered on the well respected US National Institutes of Health website can help you make the case to treat one or all of your other three endovascularly if you choose that it is safe enough.

Also, I mention this in case it will ultimately help other people with AcoM aneurysms make the case to their doctors to get a cerebral angiogram, even for small aneurysms, to ask about wall thickness, etc. Still, I understand that treatment risks of small aneurysms on the AcoM are high...a definite catch-22!

If someone knows for a fact that I am incorrect in anything I have stated, please let me know...I am still learning allot. At the same time, I have a Masters Degree in Economics and I graduated with honors, so I do know how to read a research study and I know allot about sampling and statistical techniques. I am human though and perhaps I have mis-read or misunderstood things.

Thanks again, Martin, and all the best wishes to you for a happy healthy life and for no growth in your other three aneurysms or perhaps new treatments that come our way to resolve your situation.


MartinC said:

Hi Mike

Find below a link to the most comprehensive study ever done on Un-Ruptured aneurysms, this is used by Neuro specialists worldwide when reviewing risk!

Hope this info helps you, I have 5 of these things, 2 have been coiled and stented, the other 3 remain untouched.

If they can be treated by endovascular means, then that would be my personal first choice, before open surgery.

Your specialist may also recommend a wait and see option with re-scans every year!

These things are different in most cases, so there is no one fits all response to them.

Consult with both a Neuro surgeon and a Endovascular surgeon, then decide!

Regards

Martinc

27

Hi Everyone,

I want to add that while I did research before posting this discussion, I was still questioning myself, since many doctors and studies immediately dismiss all small aneurysms. Those who have responded with additional research, stories, healthcare input, suggestions and their experience with AcoM aneurysms helps me to be strong and to not question myself when I go to meet with neurosurgeons. Without this site and all of your input, I would not have the confidence to ask more questions while still fully respecting the neurologists' education and experience. So again, thank you so much!!

Please, any additional experience is very welcome and appreciated! All my best wishes to everyone!

28

Dear Mike,

I sense that in some respects, you are in a position where I was about two to three months ago. Like you, I had an AcoA aneurysm smaller than 3 mm. I, too, am an avid researcher by nature (I have a master's too), having spent about two months researching what to do about my aneurysm. I consulted with three leading vascular neurosurgeons that specialize in aneurysms (two at Hopkins and one at Columbia) and one vascular neurologist affiliated with NIH. I read at least 30+ international studies on rupture risk and treatment options for small AcoA aneurysms. I have abstracts, studies, and notes on my computer that I would be happy to email you.

Today marks six weeks that I had my aneurysm clipped at Columbia Presbyterian University Hospital in NY. The past months have at times been quite difficult emotionally and physically, but I am very thankful to say that I am doing well now. I am incredibly relieved that the aneurysm is “perfectly” clipped. I feel I have a new lease on life. I get inspiration from Joe Biden, Sharon Stone, and Neil Young (all of whom have had unruptured and/or ruptured aneurysms), as well as from all the people on this website who graciously responded to my requests for advice. They have been an incredible resource.

I read the responses to your request and agree with the excellent advice. Perhaps what stands out most is the importance of having a doctor with has long standing experience in treating aneurysms in an institution with extensive experience in the field. Studies from New York state and guidance from the American Heart and Stroke Associations clearly point to achieving the best outcomes with doctors that have extensive experience treating aneurysms in institutions with high treatment volumes. Your case sounds complex enough for you to make a strong argument to your HMO for you to use an expert on aneurysms at a highly respected institution. At minimum, you need to consult with an expert once you have your angiogram findings.

In terms of your rupture risk, this question is best answered by a neurosurgeon since it is highly dependent on your individual situation. That said, my research found that the literature is somewhat confusing on rupture risk of small AcoAs. I understand that only the Japanese and Finns have done statistically valid, long-term studies on rupture risk. It is important to note that the Japan and Finland have genetically homogeneous populations known to have higher risk of rupture (and of aneurysms more generally) than North American European populations. A 2003 Lancet study is widely cited in the literature, where no small AcoA ruptures are noted over a five-year period for N American populations. According to my neurosurgeon (a true authority on the subject), the sample size of 175 people with small AcoA is too small to achieve high confidence levels in the findings. Several other studies, including from Calgary, Finland, Japan and Saudi Arabia, among other countries, present information that directly question the 2003 Lancet study findings with respect to small AcoA rupture risk. More recent studies out of Japan are now considered the most valid. These studies point to higher risk of rupture of small AcoAs, at about 0.9%/year, for Japanese populations. If you are young, a 0.9% annual rupture rate can add up. Both Hopkins and Thomas Jefferson University Hospital, among other institutions, recommend treatment of small AcoA aneurysms.

My take home message is the following: There may be a small, but real risk of rupture of small AcoA, depending on your angiogram findings. Seeking treatment is truly a personal decision that only you can make. You need to ask yourself if the risk of treatment is lower than the risk of rupture, noting that treatment "frontload" the risk in a highly controlled environment. You need to feel very confident in your doctor and their institution.

I could probably go on for a while more, but will save you the time. Please let me know if you I can send you the studies.

I wish you success in figuring you what option to pursue and to regaining your health,

Michele

29

Michele...I so know this is geared at Mike...My input here is tremendously complimentary of your sharing your research and results...thank you for that... I will leave everything else at this time... altho our arteries are all at such close proximity...

Again...thank you...patioplans...

Michele said:

Dear Mike,

I sense that in some respects, you are in a position where I was about two to three months ago. Like you, I had an AcoA aneurysm smaller than 3 mm. I, too, am an avid researcher by nature (I have a master's too), having spent about two months researching what to do about my aneurysm. I consulted with three leading vascular neurosurgeons that specialize in aneurysms (two at Hopkins and one at Columbia) and one vascular neurologist affiliated with NIH. I read at least 30+ international studies on rupture risk and treatment options for small AcoA aneurysms. I have abstracts, studies, and notes on my computer that I would be happy to email you.

Today marks six weeks that I had my aneurysm clipped at Columbia Presbyterian University Hospital in NY. The past months have at times been quite difficult emotionally and physically, but I am very thankful to say that I am doing well now. I am incredibly relieved that the aneurysm is “perfectly” clipped. I feel I have a new lease on life. I get inspiration from Joe Biden, Sharon Stone, and Neil Young (all of whom have had unruptured and/or ruptured aneurysms), as well as from all the people on this website who graciously responded to my requests for advice. They have been an incredible resource.

I read the responses to your request and agree with the excellent advice. Perhaps what stands out most is the importance of having a doctor with has long standing experience in treating aneurysms in an institution with extensive experience in the field. Studies from New York state and guidance from the American Heart and Stroke Associations clearly point to achieving the best outcomes with doctors that have extensive experience treating aneurysms in institutions with high treatment volumes. Your case sounds complex enough for you to make a strong argument to your HMO for you to use an expert on aneurysms at a highly respected institution. At minimum, you need to consult with an expert once you have your angiogram findings.

In terms of your rupture risk, this question is best answered by a neurosurgeon since it is highly dependent on your individual situation. That said, my research found that the literature is somewhat confusing on rupture risk of small AcoAs. I understand that only the Japanese and Finns have done statistically valid, long-term studies on rupture risk. It is important to note that the Japan and Finland have genetically homogeneous populations known to have higher risk of rupture (and of aneurysms more generally) than North American European populations. A 2003 Lancet study is widely cited in the literature, where no small AcoA ruptures are noted over a five-year period for N American populations. According to my neurosurgeon (a true authority on the subject), the sample size of 175 people with small AcoA is too small to achieve high confidence levels in the findings. Several other studies, including from Calgary, Finland, Japan and Saudi Arabia, among other countries, present information that directly question the 2003 Lancet study findings with respect to small AcoA rupture risk. More recent studies out of Japan are now considered the most valid. These studies point to higher risk of rupture of small AcoAs, at about 0.9%/year, for Japanese populations. If you are young, a 0.9% annual rupture rate can add up. Both Hopkins and Thomas Jefferson University Hospital, among other institutions, recommend treatment of small AcoA aneurysms.

My take home message is the following: There may be a small, but real risk of rupture of small AcoA, depending on your angiogram findings. Seeking treatment is truly a personal decision that only you can make. You need to ask yourself if the risk of treatment is lower than the risk of rupture, noting that treatment "frontload" the risk in a highly controlled environment. You need to feel very confident in your doctor and their institution.

I could probably go on for a while more, but will save you the time. Please let me know if you I can send you the studies.

I wish you success in figuring you what option to pursue and to regaining your health,

Michele

30

Hi Michele,

Thank you so much! I am so glad you were able to have yours clipped at one of the top institutions and I hope and will pray that things keep getting better for you in your recovery!

Your similar situation and having been to top institutions, meeting with top neurosurgeons, and researching major studies on AcoA aneurysms helps me so much in making choices going forward. Thank you for offering to send some of the studies...I have seen some of them and I trust your take on the others, based on what you have written.

I too hope mine are candidates for clipping. I haven't figured out how to get to a top doctor yet...is it that I can get an overflow referral from my own HMO or do I need to change plans and perhaps pay as much as 20-40% coinsurance?

There are two studies on the NIH website to which I was referring that sate the rupture risk is in fact double for AcoA aneurysms, Bijlenga and others, 2013, and Mira and others, 2006. As we know each person's anatomy is different and they are telling me I am missing the A1 segment of the anterior cerebral artery which increases rupture risk and I have two aneurysms on the AcoA, which also significantly increases rupture risk based on a 2003 study out of Nagasaki, National Institute of Health of Japan, 2,400 participants.

Your help and everyone's help, will help me to have the courage to keep searching for the best possible doctors, at the best possible institutions, with significant experience with aneurysms and high treatment volumes with the best percentage of positive outcomes.

I am so grateful for yours, and everyone's insight, and it helps me to be strong and optimistic to make the best possible choices.

My CTA results still have not been verified by my doctor, so I will know more soon I hope.

Michele, and everyone, would you suggest I insist on a Cerebral Angiogram, or is a CT Angiogram truly detailed enough...I know the neurosurgeon and his neurosurgeon guests in the webinars on the BAF website seem to always state that the Cerebral Angiogram is the gold standard.

Thanks again and peace and best wishes to all for solutions and speedy recoveries!

Mike

31

Michele,

Can you let me know how you came to the decision to be treated at Columbia instead of Johns Hopkins and which doctor treated you at Columbia. I am anxious to take my husband to both centers to meet with specialists there.

Thanks.

Michele said:

Dear Mike,

I sense that in some respects, you are in a position where I was about two to three months ago. Like you, I had an AcoA aneurysm smaller than 3 mm. I, too, am an avid researcher by nature (I have a master's too), having spent about two months researching what to do about my aneurysm. I consulted with three leading vascular neurosurgeons that specialize in aneurysms (two at Hopkins and one at Columbia) and one vascular neurologist affiliated with NIH. I read at least 30+ international studies on rupture risk and treatment options for small AcoA aneurysms. I have abstracts, studies, and notes on my computer that I would be happy to email you.

Today marks six weeks that I had my aneurysm clipped at Columbia Presbyterian University Hospital in NY. The past months have at times been quite difficult emotionally and physically, but I am very thankful to say that I am doing well now. I am incredibly relieved that the aneurysm is “perfectly” clipped. I feel I have a new lease on life. I get inspiration from Joe Biden, Sharon Stone, and Neil Young (all of whom have had unruptured and/or ruptured aneurysms), as well as from all the people on this website who graciously responded to my requests for advice. They have been an incredible resource.

I read the responses to your request and agree with the excellent advice. Perhaps what stands out most is the importance of having a doctor with has long standing experience in treating aneurysms in an institution with extensive experience in the field. Studies from New York state and guidance from the American Heart and Stroke Associations clearly point to achieving the best outcomes with doctors that have extensive experience treating aneurysms in institutions with high treatment volumes. Your case sounds complex enough for you to make a strong argument to your HMO for you to use an expert on aneurysms at a highly respected institution. At minimum, you need to consult with an expert once you have your angiogram findings.

In terms of your rupture risk, this question is best answered by a neurosurgeon since it is highly dependent on your individual situation. That said, my research found that the literature is somewhat confusing on rupture risk of small AcoAs. I understand that only the Japanese and Finns have done statistically valid, long-term studies on rupture risk. It is important to note that the Japan and Finland have genetically homogeneous populations known to have higher risk of rupture (and of aneurysms more generally) than North American European populations. A 2003 Lancet study is widely cited in the literature, where no small AcoA ruptures are noted over a five-year period for N American populations. According to my neurosurgeon (a true authority on the subject), the sample size of 175 people with small AcoA is too small to achieve high confidence levels in the findings. Several other studies, including from Calgary, Finland, Japan and Saudi Arabia, among other countries, present information that directly question the 2003 Lancet study findings with respect to small AcoA rupture risk. More recent studies out of Japan are now considered the most valid. These studies point to higher risk of rupture of small AcoAs, at about 0.9%/year, for Japanese populations. If you are young, a 0.9% annual rupture rate can add up. Both Hopkins and Thomas Jefferson University Hospital, among other institutions, recommend treatment of small AcoA aneurysms.

My take home message is the following: There may be a small, but real risk of rupture of small AcoA, depending on your angiogram findings. Seeking treatment is truly a personal decision that only you can make. You need to ask yourself if the risk of treatment is lower than the risk of rupture, noting that treatment "frontload" the risk in a highly controlled environment. You need to feel very confident in your doctor and their institution.

I could probably go on for a while more, but will save you the time. Please let me know if you I can send you the studies.

I wish you success in figuring you what option to pursue and to regaining your health,

Michele

32


Mike,

My husband has had an angio, and we will probably be repeating this soon. I would ask for one.

Best,

Naisy
Michael Kirk said:

Hi Michele,

Thank you so much! I am so glad you were able to have yours clipped at one of the top institutions and I hope and will pray that things keep getting better for you in your recovery!

Your similar situation and having been to top institutions, meeting with top neurosurgeons, and researching major studies on AcoA aneurysms helps me so much in making choices going forward. Thank you for offering to send some of the studies...I have seen some of them and I trust your take on the others, based on what you have written.

I too hope mine are candidates for clipping. I haven't figured out how to get to a top doctor yet...is it that I can get an overflow referral from my own HMO or do I need to change plans and perhaps pay as much as 20-40% coinsurance?

There are two studies on the NIH website to which I was referring that sate the rupture risk is in fact double for AcoA aneurysms, Bijlenga and others, 2013, and Mira and others, 2006. As we know each person's anatomy is different and they are telling me I am missing the A1 segment of the anterior cerebral artery which increases rupture risk and I have two aneurysms on the AcoA, which also significantly increases rupture risk based on a 2003 study out of Nagasaki, National Institute of Health of Japan, 2,400 participants.

Your help and everyone's help, will help me to have the courage to keep searching for the best possible doctors, at the best possible institutions, with significant experience with aneurysms and high treatment volumes with the best percentage of positive outcomes.

I am so grateful for yours, and everyone's insight, and it helps me to be strong and optimistic to make the best possible choices.

My CTA results still have not been verified by my doctor, so I will know more soon I hope.

Michele, and everyone, would you suggest I insist on a Cerebral Angiogram, or is a CT Angiogram truly detailed enough...I know the neurosurgeon and his neurosurgeon guests in the webinars on the BAF website seem to always state that the Cerebral Angiogram is the gold standard.

Thanks again and peace and best wishes to all for solutions and speedy recoveries!

Mike

33

Hi Mike, in regards to a cerebral angiogram, it is the gold standard. I know that my neurosurgeon wouldn’t have touched me without it. He could tell that my aneurysm was deteriorating, that it had a daughter attached to it, and that I needed surgery quickly. I would certainly ask the doctor about having one. I don’t know about hmo’s, but hopefully there is a way to get to a very experienced neurosurgeon. Wishing you all the best. Please keep us updated.
Joan

34

Thanks so much Joan and Naisy,

I will definitely insist on the cerebral angiogram! In fact, I still have not heard from my doctor about the CT Angiogram, but we went to the diagnostic center to pick up a disk and a hard copy of the report, and the way we read it, in two places, the report now states I may have no aneurysm!? The radiologist who wrote that report still suggests a cerebral arteriogram.

Of course, we are more than thrilled if this is the case, although we are so perplexed that an MRA can state so specifically, and definitively, that I had two aneurysms present, on the very small specific location of the anterior communicating artery, and it states that one was anterior leaning, one was posterior leaning, and they were both saccular!

I was under the impression that MRA technology is excellent and for the radiologist on that report to state things so definitively and specifically has us so perplexed. Of course, we still want the cerebral arteriogram done to be absolutely sure....is this the same thing as a cerebral angiogram?

This just goes to prove that tests may be completely wrong in even detection of an aneurysm, much less providing specific information about dome direction, shape, wall thickness, etc. Although, it sounds like the cerebral angiogram or arteriorgram can definitively show all of this. I wonder why the cerebral angiogram or arteriogram isn't done immediately when an aneurysm is definitely suspected by a radiologist on any less certain test?

I ask for your prayers that the cerebral arteriogram or angiogram states I have no aneurysms. What a rollercoaster!

Thanks, so much, again, to everyone and I'll keep you posted!

35

Hi Mike and Iris,

I'm glad you have found my response to be useful. It must be very difficult to have such confusing results from the CTA. Clearly, you need to find a good neurologist/neurosurgeon to guide you.

Here are my responses to your recent questions:

  1. Regarding the cerebral angiogram, I also understand it is the gold standard. My surgeon referred to it before the operation, as it offers a far more detailed view of the aneurysm over a CTA. Mike, angiograms are endovascular procedures done by neurosurgeons, and therefore require specialized equipment. My neurosurgeon at Hopkins insisted that I get one in order to better understand my aneurysm and to determine the recommended course of treatment. She only recommended that I get a clipping after the angiogram.
  2. My decision to have the clipping at Columbia with Dr. Sander Connolly was based having a better support system for my post-operative recovery in New York City, where my family is located. Also, I knew Columbia Presbyterian very well from a family member’s previous illness, and therefore was quite comfortable with the hospital. Furthermore, Dr. Connolly is very highly regarded in the field, and Columbia rates very high in US World Report listings for neurology. A study on clipping outcomes in New York State rated Columbia as number one. All these factors weighed in favor of Columbia. That said, I have a great deal of respect for Johns Hopkins and the doctors there. They have a great reputation with a deep experience.

Good luck,

Michele

36

Thank you, Michelle,

I am also aware of the US News and World Report listing on Aneurysm treatment, which ranks Cleveland, Hopkins, NY Presbyterian, Mayo and San Francisco among the top. We have friends, but no family in New York. We have family in Maryland and in San Francisco. So, ideally, I am hoping to get some 4th, 5th and 6th opinions here.

Do you mind if I ask why clipping was favored over coiling in your case?

Thanks for all your help!

Naisy


Michele said:

Hi Mike and Iris,

I'm glad you have found my response to be useful. It must be very difficult to have such confusing results from the CTA. Clearly, you need to find a good neurologist/neurosurgeon to guide you.

Here are my responses to your recent questions:

  1. Regarding the cerebral angiogram, I also understand it is the gold standard. My surgeon referred to it before the operation, as it offers a far more detailed view of the aneurysm over a CTA. Mike, angiograms are endovascular procedures done by neurosurgeons, and therefore require specialized equipment. My neurosurgeon at Hopkins insisted that I get one in order to better understand my aneurysm and to determine the recommended course of treatment. She only recommended that I get a clipping after the angiogram.
  2. My decision to have the clipping at Columbia with Dr. Sander Connolly was based having a better support system for my post-operative recovery in New York City, where my family is located. Also, I knew Columbia Presbyterian very well from a family member’s previous illness, and therefore was quite comfortable with the hospital. Furthermore, Dr. Connolly is very highly regarded in the field, and Columbia rates very high in US World Report listings for neurology. A study on clipping outcomes in New York State rated Columbia as number one. All these factors weighed in favor of Columbia. That said, I have a great deal of respect for Johns Hopkins and the doctors there. They have a great reputation with a deep experience.

Good luck,

Michele

37

Hi Naisy,

Another point of advice: I would go to the highest ranking hospital and most experienced neurosurgeon that is closest to your home. I must say it is not ideal to have had the procedure in New York and live in DC. I cannot simply run to the neurosurgeon if I complication emerges. Everything is done remotely, which is not ideal.

Why clipping over coiling? I was told by all three neurosurgeons that I consulted at Hopkins and Columbia that my aneurysm was too small for coiling at less than 3mm, as there is no margin for error should the catheter "slip", or just mess up. The risk is that the catheter itself could cause a rupture, which would be hard to fix quickly. All three said that the clipping was the safer option in my case. I have seen literature as well saying that there is a higher risk of rupture when coiling a small aneurysm, although I do understand that the small ones are also coiled.

Regards,

Michele

38


Michele, did all three suggest coiling? Did anyone think "monitoring" was an option for a time being? We had a rupture with coiling, and my husband is not eager to go through surgery. I know most people are eager to do something about it if it is caught ahead of time. But, our experience was a real nightmare, so we are so not eager to jump on to surgery. Also, we were probably seen by the best in our area. I am in South Florida. I know that logistically it is best to do it locally, but given past experience, I also would want treatment at those top 5 hospitals. I have also read that clipping is also risky at this size, but perhaps more manageable if there is a rupture.

If you have any studies that you can share, please pass them along.

Michele said:

Hi Naisy,

Another point of advice: I would go to the highest ranking hospital and most experienced neurosurgeon that is closest to your home. I must say it is not ideal to have had the procedure in New York and live in DC. I cannot simply run to the neurosurgeon if I complication emerges. Everything is done remotely, which is not ideal.

Why clipping over coiling? I was told by all three neurosurgeons that I consulted at Hopkins and Columbia that my aneurysm was too small for coiling at less than 3mm, as there is no margin for error should the catheter "slip", or just mess up. The risk is that the catheter itself could cause a rupture, which would be hard to fix quickly. All three said that the clipping was the safer option in my case. I have seen literature as well saying that there is a higher risk of rupture when coiling a small aneurysm, although I do understand that the small ones are also coiled.

Regards,

Michele

39



IrisD said:


Michele, did all three suggest clipping? Did anyone think "monitoring" was an option for a time being? We had a rupture with coiling, and my husband is not eager to go through surgery. I know most people are eager to do something about it if it is caught ahead of time. But, our experience was a real nightmare, so we are so not eager to jump on to surgery. Also, we were probably seen by the best in our area. I am in South Florida. I know that logistically it is best to do it locally, but given past experience, I also would want treatment at those top 5 hospitals. I have also read that clipping is also risky at this size, but perhaps more manageable if there is a rupture.

If you have any studies that you can share, please pass them along.

Michele said:

Hi Naisy,

Another point of advice: I would go to the highest ranking hospital and most experienced neurosurgeon that is closest to your home. I must say it is not ideal to have had the procedure in New York and live in DC. I cannot simply run to the neurosurgeon if I complication emerges. Everything is done remotely, which is not ideal.

Why clipping over coiling? I was told by all three neurosurgeons that I consulted at Hopkins and Columbia that my aneurysm was too small for coiling at less than 3mm, as there is no margin for error should the catheter "slip", or just mess up. The risk is that the catheter itself could cause a rupture, which would be hard to fix quickly. All three said that the clipping was the safer option in my case. I have seen literature as well saying that there is a higher risk of rupture when coiling a small aneurysm, although I do understand that the small ones are also coiled.

Regards,

Michele

40

Hi Iris,

I am very sorry to read that the coiling resulted in a rupture. I can understand your caution in having more procedures. Just to remind you, I had a clipping, not coiling. I was informed that my aneurysm was too small at less than 3 mm for a coiling, and so the docs recommended the clipping. I had not heard that clippings are riskier for small aneurysms.

I certainly agree that if you have a complicated case, it's worth having a consultation with an experienced neurosurgeon. I'm happy to share the electronic versions of the studies that I have. Let's communicate through email to exchange emails.

My best,

Michele


IrisD said:


Michele, did all three suggest coiling? Did anyone think "monitoring" was an option for a time being? We had a rupture with coiling, and my husband is not eager to go through surgery. I know most people are eager to do something about it if it is caught ahead of time. But, our experience was a real nightmare, so we are so not eager to jump on to surgery. Also, we were probably seen by the best in our area. I am in South Florida. I know that logistically it is best to do it locally, but given past experience, I also would want treatment at those top 5 hospitals. I have also read that clipping is also risky at this size, but perhaps more manageable if there is a rupture.

If you have any studies that you can share, please pass them along.

Michele said:

Hi Naisy,

Another point of advice: I would go to the highest ranking hospital and most experienced neurosurgeon that is closest to your home. I must say it is not ideal to have had the procedure in New York and live in DC. I cannot simply run to the neurosurgeon if I complication emerges. Everything is done remotely, which is not ideal.

Why clipping over coiling? I was told by all three neurosurgeons that I consulted at Hopkins and Columbia that my aneurysm was too small for coiling at less than 3mm, as there is no margin for error should the catheter "slip", or just mess up. The risk is that the catheter itself could cause a rupture, which would be hard to fix quickly. All three said that the clipping was the safer option in my case. I have seen literature as well saying that there is a higher risk of rupture when coiling a small aneurysm, although I do understand that the small ones are also coiled.

Regards,

Michele