The Return Of Mickey

General
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Hello all! I haven’t been on in a while because I got busy with life, work and family after my rupture of 4 years ago. However last week I got the results of my latest MRA and they were not what I would have hoped.

Two years ago I reported on this site that I was told I had a residual aneurysm due to the compaction of the coils. I saw 3 different doctors. One said it should be treated and the other two including the one who did the original surgery said “Leave it alone, it’s too dangerous”. They stated the location and size make it very difficult to treat by more coils or open surgery. They told me to consider how well I was doing. They both used the term ‘Quality of life” to compare where I am now after an almost complete recovery, to where I could be if something went terribly wrong. I opted to wait.

Well last week I was told the coils have compacted further and the residual aneurysm has grown. The neck is as wide and the depth is about half what was when it raptured. Now he tells me I should seriously consider treatment. He asked me to consider “My live expectance at my age”. In other words, I would live longer if I do the procedure. Well, what happened to “It’s too dangerous” to treat?

My wife wants me to schedule the suggested procedure with stents and coils ASAP. However I am very reluctant to do this. The words “Leave it alone, it’s too dangerous” keep playing back in my mind. I am not afraid of dying. I am afraid of having a massive stroke and being a burden on my family for the rest of my life.

I am actually leaning toward doing nothing. I know this may sound strange to some, but I am not anxious at all about this. To be honest I don’t give it much thought unless my wife asks, or something from the doctor’s office comes up. I haven’t told anyone but my wife and I asked her not to tell anyone because I don’t want them to worry and I don’t want to be pressured.

I guess I really don’t have a question. I am just bouncing this off a group that understands and I was wondering if anyone else has an opinion. I have attached a picture of my coiled aneurysm with the residual neck for those who like visuals. BTW, Mickey is the name I gave my aneurysm due to its Mickey Mouse ear shape.

Thank for listening.


74-brain.JPG (31.5 KB)
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Tony...welcome back; I wish it was for other reasons...

To make my note short, I made your (suggested) decision, in mid-2008 when I decided to not go in for "angio and coil"...I did break out in shingle's; all was delayed...and, still is.

This past decade+, I have lost family/friends to cancer/other disease...then, our daily media coverage on all the rest from quake, slides, plane crashes..to MRSA/equivalent in the hospitals.

Then, most important, my initial diagnostic: "ACOM...no aneurysms" to mid-2008 "ACOM not present". I first panicked, imaging a vessel disease or was the record wrong? I did not get an answer and was finally terminated as a patient by the "2nd opinion" docs. It was then so easy for me to make my decision. Altho I wanted to know about it; I secured a 3rd opinion which is another chapter or two.

Tony, you have been blessed by your recovery to essentially a fully normal life. Another benefit you have now, is that you can decide and have time to think it thru decide to change it.

Prayers you will get responses from others.

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P.S. for Mickey...I posted my 11th anniversary and images recently. And, I have talked w/my artist about a small adjustment to denote my "ACOM...not present" in my Tree of Life pendant...

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Thanks for your response. I am not sure what "ACOM...not present" means. But I get from your post that your were given a choice and decided to not have the surgery. have you had additional follow?

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Tony, I understand your angst. Have you asked your doctor to clarify the differences in opinion? What risks does he foresee as a possibility. Perhaps you could sit down with your wife and make a list that you could both discuss with the doctor. Brain surgery really keeps advancing. Have you tried UCLA or UCSF? I’m not sure which is closer to you.

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Molroub,

I have been to the top guy at Cedars Sinai as well as 2 others. Opinions seem change like the wind.

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Tony...the ACOM was minimally invasively removed... it is a long story w/the formal diagnosis of the L MCA /L ACA: thromboemboli...as you know, the ACOM connects the L ACA and R ACA.

Tony Perricone said:

Thanks for your response. I am not sure what "ACOM...not present" means. But I get from your post that your were given a choice and decided to not have the surgery. have you had additional follow?

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How about Mayo in Scottsdale? Or, the Barrow Institute in Phoenix? there is also another in UCSF,,,andm his name is slipping...another member complimented him recently and, someone else had already complimented him... (I can recognize a name reading it...not from memory for a long long time)

Tony Perricone said:

Molroub,

I have been to the top guy at Cedars Sinai as well as 2 others. Opinions seem change like the wind.

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UCSF is Michael Lawton, Barrows in AZ is Dr. Spetzler - both are top notch

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Hi Tony, I can only speak from my own experience. I had a massive (stage 5) ruptured aneurysm on 7/11/2013. I was lucky to have survived and operated on, 3 week coma, 4 coils and many months of hospitals and rehab clinics later. They found another aneurysm last year at my 6 months MRI check up and I didn't even think about it twice and had the operation 2 weeks later in June 2014 with 2 more coils inserted. My belief is that I would never wait to go through the hell again that I had with a ruptured aneurysm. I also believe that the chances of anything happening is much less when the operation is done on a non ruptured aneurysm. I hope this helps somewhat. Good luck.

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hi tony and sorry you had bad news. As my neurological interventionist said to me a while ago, there are treatment advances every year. I have a 4mm unruptured which he says is difficult to treat so this is specifically what he was addressing, my two larger aneurysms (one ruptured, one unruptured) were both coiled successfully. Is it possible that the approach they plan to take wasn't available 4 years ago? I think you should put your questions to him directly, why did he say it was too dangerous back then, but is recommending treatment now? It could be due to advances in imaging/treatment or the risks have simply changed. e.g. way back then, the aneurysm was low risk so not seriously worth fixing in case it went wrong, but now if the aneurysm is a higher risk (it sounds like it probably is), the risk of fixing vs leaving it alone have changed. I think you need another appointment with him and see what his thinking is.

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Hi Tony, my opinion is biased since i had a sah and permanently disabled- i agree w the mirs and get this stented off. So sorry you are having to deal with this, my heart goes out to you, tc prayers for you too

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Hi Tony. I read your post and understand exactly what you are going through.

I have 5, two which have been coiled and stented and 3 which need open surgery, I elected to go the cowards route as some may say and have the ones that could be fixed by coiling sorted first.

The reason is simple I cannot get my head around some bugger cutting two massive holes in my head, with the resultant consequences, so I elected not to have the other 3 clipped, the biggest is 11mm and the others are 6mm.

Now that I have said the above, I would have no hesitation in having those other 3 tackled if it could be done by coiling and stents, treatments and procedures are changing every month and what was not possible a year ago is now possible!

So there in lies the quandary? To Fix or not to Fix?

As a Scot living in England I am a realist and I know what it is like to live with these vile things!

To be honest if the Endovascular surgeon is convinced that he can sort Mickey out by coiling and stents, then I would go for it! Get a second opinion by all means!

I know that living with these things is not easy and we all say they do not worry me? I know different, for there is not a day that I do not think about them and what may happen.

Just like you I do not want to be a burden to family if something goes wrong, I sorted that issue by writing a living will which basically gives two specialists the right to switch off life support if there is brain damage or it all goes pear shape!

I fully understand how you feel my friend and I know it is not easy, but sometimes it comes to decision time, in order to move forward with your life.

Please feel free to contact me anytime.

Best Wishes

Martinc