Brain Aneurysm Support Community

In Limbo and need some guidance

#1

OK, so I have seen two respected surgeons following my discovery of a 4-5 MM brain Anuerysm in the ICA region a year ago. Both believe I should get it surgically repaired by occlusion. But after reviewing studies over many months, the chance of rupturing is 2% per 30 years. If I live 25 more years (I am 58), that is only a 1.75% chance in my lifetime. The chance of a fatal event immediately upon surgery or serious morbidity following is much higher. What’s more, the impact of taking blood thinners etc for many years frightens me. I don’t know what to do. Do I base my decisons based on these studies and follow with further MRI/CTs to see if it grows as they reccommend or do I go and fix it now as the surgeons advise. (NOTE coil only succeeds 80% of the time as well).

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#2

Hmmm, I ruptured with a small 5mm multilobed aneurysm on the left ICA at a bifurcation. Do the surgeons suggest coiling or craniotomy to occlude it? What are their arguments in doing either procedure? Besides size, the surgeons go with location.

While we all we have personal opinions on taking care of it or staying on the watch and wait, the decision is yours alone to make it seems. Honestly, I don’t know what I would have done, probably taken the risk of not, but I despise hospitals.

I can share what my rupture did to me…I am no longer able to work and it took several years to get covered here in the States for disability and Medicare. I developed a stutter and have a tremor. I am at times easily confused. I don’t understand innuendos. Although I may still be able to use the written word for communication, I lose words when speaking, a lot of words. I have brain damage in several areas of my brain, temporal, parietal, occipital lobes and the corpus callosum. While I know that my brain is retraining the routes information uses, it has been a frustrating challenge to say the least.

If I look at the 26 days in ICU compared to an overnight stay, I would probably pick the overnight hoping that nothing went awry during the procedure. But that’s my personal hindsight.

Now I look at life as quality, not quantity. Whatever you decide, we are here to support you.

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#3

Hi, I can tell you that I am dealing with the same issues as Moltroub. I was diagnosed with two aneurysms. I was given an Angiogram and it was determined that I needed emergency surgery for 6mm L Medial, as I was also suffering from Subarachnoid hemorrhage (SAH). Had a craniotomy on left side to clip that aneurysm on 8/30/17 and a craniotomy on R side on 9/11/17 and it was determined that it should not be disturbed as it was 2mm and unruptured . It is of course your decision. I had my annual check up last August of '18. I was out for 4 months, but should have taken a year. Make sure that you have signed up for Short Term Disability (STD) and most importantly Long Term Disability (LTD), which will allow you to stay out the amount of time you need. I came back to work on reduced hrs and tried and than tried to go all day, big mistake, which lasted about 2 months. I am back on reduced hrs.

Please make sure you advocate for yourself. You may feel loyalty to your job, but I can assure they won’t reciprocate.

If you decide to go the route of surgery find a support group near you (you can locate one on this site under support). Very important. People may ask how you are and think they understand, but trust me only those of us who have been thru it can and will answer to your symptoms before you finish describing them. And yes, your life will be based on quality not quantity. Do not let your ego get in the way:grinning:

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#4

They both advocate coiling. My mom had a unruptered aneurysm at age 50 back in 1980 and had a craniotomy. She lived a long life but she was never the same after surgery. A very vibrant smart woman became sweet and a bit crazy and sickly thereafter. But lovable just the same. I am scared both ways really.

#5

So that puts things in a bit of a different perspective…having a relative. I have no familial history to my knowledge. Granny (not mine by blood) may have had a ruptured aneurysm in 1960 or there about, they also did a craniotomy as that was the only procedure available. If she was out in the sun, that metal plate would heat up and she would start talking of things I knew nothing about. Easy fix to get her out of the sun and hydrated. She lived well into her 80’s and I was privileged to call her Granny.

Procedures are much different now days. There are still risks of course as there are with life itself. The good thing about coiling is less possibility of infection. Whenever my surgeon has done my angiograms they’ve always been in through the groin, up around the heart and into my brain. I’m short so that’s a positive in my book :laughing:. Now the same facility is going through the arm and into the brain! I rely on my surgeon, but I have the benefit of her and her team saving my life.

I found this site shortly after my year of not researching was over http://neuroangio.org/patient-information/patient-information-brain-aneurysm/

I really like it for many reasons, probably the best is “it depends” attitude. Nothing in Life is predictable.

What were the arguments from both specialists to go ahead and coil rather than watch?

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#6

My mom had a Aneurysm but no rupture. It was rather unusual back in 1980 to operate under that scenario. The guy here in Miami, Dr. Peterson did a angiogram through the arm; said due to my lifetime smoking and my mothers history he would do it. The guy at Hopkins who I won’t name but rather famous, was truly a snake oil salesman in my opinion. He said it was 70% chance and the studies are not accurate. Rude, hard selling. Turned me off immediately.

#7

The thing that I most appreciate about Dr. Q-W is her willingness to be honest… she doesn’t sugar coat things, she refers to her experience. I’m not impressed by statistics for the most part unless the researcher stated in the beginning the statistic stuff (sorry I forgot the word) If I don’t know something, or have forgotten, Dr. Wolfe always takes her time to answer so I get it. She also listens to me, my theories, etc. I feel valued by her attentiveness, not a steer going up the ramp for slaughter. It’s very important to trust your surgeon.

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#8

Hey Taxmeless,
In my opinion (and it is only ‘my opinion’) you can review all the studies ever written, review all the statistical data, but none of them take your individual situation into consideration nor the location of your specific annie. As for the statistics, there is a saying “…there are three kinds of lies: lies, damn lies and statistics…” depending on whose statistics you view, on what point those stats are trying to make, they can be twisted to meet any point of view. I would not be basing any decision on stats.

Now, your surgeons are taking your specific situation into consideration, the type and location of the annie and are recommending surgery. You also have some family history. You have been given some valuable advice here from both Moltroub and Orlitas in regard to the impact of a rupture.

The decision here is 100% yours BUT considering the information above, I’d be telling you to follow through with the surgeons recommended treatment. I can tell you from my own experience neurosurgery should not be undertaken lightly, the impacts can be life changing but then so can a rupture, hell, a rupture could kill you. This is NOT a nice position to be in but I’d be saying to take the lesser of two evils, have the recommended surgery.

Merl from the Moderator Support Team

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#9

Hi! I will echo that ultimately only you will know the right decision for you. I had an unruptured 4mm aneurysm on my left MCA at a bifurcation. Coiling was not an option but I was given the choice of watching and waiting or clipping. With my personality, I never could have just watched and waited. My grandma had her unruptured aneurysm in the 1980s repaired and my recovery couldn’t have been more different than hers. She lost the function of an eye and had to wear a patch and was unable to be active after. My recovery was not a walk in the park, but I was back to work after 6 weeks and no one would ever know I had this surgery if I don’t tell them. It’s up to you for sure, but I just wanted to give an example of the difference in outcomes over the years. I also was relieved mine couldn’t be coiled because again with my personality I know that the clipping is a permanent fix and I don’t need to take any medicine at all. My surgeon toms me it was good I decided to have the surgery now because when he went in it was so thin, it would have ruptured sooner than later. Again, just my experience. All the best to you as you navigate this!!

#10

Thanks for the info. MCA is more prone to rupture then iCA. I would probably done the same if I was you. With an ICA 4mm aneurysm I am leaning to continued observation and pause. Thanks love!

#11

All the best to you!

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#12

I come from a different perspective. I believe stats are exactly what is needed in medicine and often lacking. Thankfully, with the computer age, stats are being compiled more and more. I will give you my lung nodule example. I had a 8 mm nodule in my lung. The top flight surgeon wanted to cut it out. I read the nelson study out of europe (granted that study had far more participants then current studies in aneurysms) that said if the nodule remains stready or declines in size then it cant be cancer. I waited 4 months and took another ct scan and it declined to 4mm. Since it has remained stable at 4mm for 2 years. It saved my lung and my health. The American, Japanese, and European studies show that a 4mm ICA aneurysm to be highly unlikely to rupture within 30 years (worst case 10%, best case near zero)… The chance that I have a fatal event or the outcome will be I rather be dead is near 10%.with the operation. Not counting the issues of recovery or blood thinners. The mortality rates alone in year one approaches 5% for even small aneurysm operations in the USA. ICA aneurysms of this size from the NIH, Neurological society, and any other reputable source says dont operate. I fear surgeons just love to do their job, and arent following medical science.

#13

Thank you for that perspective. My wife and I appreciate it!

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#14

It sounds like you have most/all of the information you need. I would add, I too read EVERYTHING, stats, etc. I do not trust doctors thanks to a lot of misdiagnoses. Bottom Line, I don’t trust doctors and was not going to do surgery. I had a professionally prepared report detailing saying I could wait or I could have surgery now. I actually called the surgeon and told him I wanted to wait, and he told me something that wasn’t in my report. “Your aneurysm can cause a stroke without even rupturing because of its size and location (8x6), you really need to do surgery now”. So that changed the game for me right there. I had to put my trust in him and I received surgery. I am living a healthy life. It was not fun recovery process, but I’m glad I did it and don’t have to stress about it anymore. So just make sure you have all the facts.

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#15

Hey Taxmeless,
I do not disagree with some of your theories for some medical procedures, but when it comes to neurology defining a set norm is near on impossible. Two separate individuals can have the exact same condition, treated in exactly the same way, but have vastly differing results. No two brains are wired in exactly the same way, they may have all of the same architecture in exactly the same places but how they are all wired together varies with each individual. The neuros themselves will (sometimes) admit they are unsure of the outcome of a particular procedure, they can give us a ‘Best case scenario’ but they cannot guarantee that the scenario given will be the set outcome. I wish they could, but for some of us that scenario has not been the eventual reality.

For example, I’ve required a few neurosurgeries and each has hit me harder and harder. I could say that if I knew this was to be the eventual outcome, then I wouldn’t have had the initial surgery. But taking the optimistic view or the ‘Best case scenario’, they would operate and they would fix. This was not the case. I must admit without the initial surgery I may not have had the years of relief I initially had, but the long term consequences have had a compounding affect that could not have been predicted at the time this process had been started. So the statistical data did not match the eventual outcome, hence my sceptical view of the stats.

Merl from the Moderator Support Team

#16

I would add to Merl’s Commentary about statistics. The ISUAT has much different outcomes for aneurysms than the less noted ISAT. You must be very careful in looking at all the studies, the countries involved and their procedures of who they take as subjects and who and why they are omitted.

Personally, and this is only my opinion, so take it for what it’s worth…I think the ISAT was not especially well received due to popular opinion of the current practices. It disproved the more popular ISUAT in my opinion. Remember, neurosurgery practices change quite often.

I’ve personally had three or four types of closure devices used in less than five years all in my groin. Now they do the arm and yet another type of closure device. I firmly believe that if my Neurosurgeon had kept me in the box and did the common practices, I’d be dead as a doornail. Luckily, for me, she is able to take each individual as an individual.

#17

I appreciate all your thoughts. My.opinion is aneurysm studies are no different then lung nodules. All of them have outliers but you really need to look at odds before proceeding. Ica 4mm has a very low overall rupture rate. If i was talking about the basilar tip, or 8mm, or berry type then of.course its time to let surgeons do their thing. But every study says 4mm ica dont touch. The surgeons are clearly not following science in my case…

#18

Not true on size as numerous studies are showing around the world. And I would argue that with the low number of us who rupture per year, the stats just aren’t extremely significant as they are often corrupted by the researcher.

I would caution to look at studies no older than five or six years old. The research is always changing. Here’s a current study from China on Small Intercranial Anuerysms https://www.nature.com/articles/s41598-■■■■2-1

But in the end, the decision of course lies with you. So what are you in limbo about if you have already made your decision? I don’t mean to sound rude, just curious…

#19

I can only tell you my experiences. Mine ruptured (over middle of cerebellum) and was repaired by clipping last fall. My understanding is that this repair essentially eliminated the possibility of recurrence. Is clipping the same as occlusion? I do not know all the technical terms. I am not very far out from my surgery yet I my experience has been successful thus far. I am rehabbing faithfully so that probably works in my favor. I am sorry you have to make such a decision. If I had known about the AVM, would I have opted for surgery? Perhaps I would have just toned my life down and reflected how to protect against the rupture. Not sure. I do feel grateful now for having had a good outcome.

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#20

I had an unruptured anyerism. I chose clipping as s permanent solution. Also did not want to be on blood thinners. Surprisingly I developed blood clots in both lungs. So I’m on blood thinners anyway . Now diagnosed with breast cancer. You dont know what life has in store for us. Make the best decision you can and live life to the fullest one day at a time

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