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Angio is over - home relaxing (Read 3716 times)
Greg-NJ1
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Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male
Angio is over - home relaxing
Jun 20th, 2007 at 11:28am
 
Hi all,

Olga and I got home from the hospital late yesterday afternoon from my Cerebral Angio. Well, I think I learned the lesson of why a Cerebral Angio is the only true diagnositic tool...you may recall that I have a CT-Angio a few weeks back which indicated that my left-MCA was fully closed. Yesterday's angio revealed that the artery is indeed OPEN and has NOT changed since my angio in Jan 2006.

Although I have not gotten the final report, the doctors did indicate that it is NOT MM, but rather an AVM disection. In English, it looks like the artery has not gone through a stenosis, but rather is damaged scare tissue from some former injury to the head...(and seeing that I was a rather agressive sports player with a few concussions this makes sense), and that the brain has tried to correct the reduced blood flow with a few large colaterals.

Today, I am home resting, and a bit sore. I have copies of my films from yesterday on CD. This afternoon they will be mailed to my doctors in NYC for review and comments...then on for more opinions it is.

At this point, I am just glad to hear that the artery is still open...and the blood is still flowing....doctor also mention that my colaterals are in excellent shape.

Onward we go.

I also wanted to thank everyone for the warm wishes and prayers.

Thanks again,
Greg
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I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.
 
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lotsofkids
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Moyamoya...Oh boya boya!

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Akron, USA, usa, 421, 123, OH, Ohio
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Re: Angio is over - home relaxing
Reply #1 - Jun 20th, 2007 at 5:38pm
 
Well I am happy to jump in and say "good news"....it is good news...right?

To hear your MCA is actually open is great news...the fact that what you do have might not be progressive...and that the collaterals are in excellent shape and not a hemorraging risk is very comforting!

But where to go from here is the real question, you may still need some re-vascularization as you do have flow issues. The fact that you produced collaterals in the first place...is your bodies response to needing more blood oxygen to your brain. That still troubles me.

Glad to hear you are done and now resting with Olga at home. Keep us posted on what the docs will suggest for you....as the ultimate point here is to get you into a safe and healthy zone! Reducing sx's and  feeling better will be on that list too!

best wishes....Diane   : )
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Hmmm....seems I'm kinda "special" LOL
 
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

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Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: Angio is over - home relaxing
Reply #2 - Jun 20th, 2007 at 8:32pm
 
Hi Greg,

Glad to hear you are home and resting.

When you had sports injuries, what tests were done at that time?  How long ago was that?  I guess I'm still confused as I would think that a dissection would occur immediately meaning not over time if it was a result of an accident or injury and if the dissection was not from a progressive disease like MM. I don't know....I'm just throwing some thoughts out here.  I guess I don't know what an AVM dissection is so that might be the missing piece of the puzzle and perhaps it is possible to have a dissection overtime from an injury?

What treatment options if any have been suggested for the AVM dissection?

I'm anxious to hear other opinions.

Hang in there and keep us posted.

Hugs,

Lore


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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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Greg-NJ1
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Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male
Re: Angio is over - home relaxing
Reply #3 - Jun 21st, 2007 at 11:07am
 
Lore and Diane

Good points.....

Lets see, at 16 (ok 21 years ago) I had a bad bicycle accident. I was in a race, had my front wheel lock up at about 20 miles an hour (slight downhill) over the handlebar, did the tuck and roll thing, but landed on my left should, neck and head...out cold, came too in a few seconds, busted collar bone....major headache. Welcome back to 1986, the only test was x-rays for the shoulder/collar bone/skull....headache was never considered but lasted for days.....at 18 major concussion playing hockey (I was goally), took the puck in the left temple area of my helmet....busted helmet...out cold...x-ray, no damage to skull....there are a few other examples, but too long to write.

Per the conversations with the doctors (more to come next week once my NYC drs review), it appears that a AVM disection can occur at any time....from the sounds of it, (remember I am not a doctor) the healing process sounds a bit like a plaque build up on arterial walls....gradually getting smaller over time until it stablizes. But what they can't tell is how thick the artery wall is, as the angio only shows the space where the blood is flowing. Needless to say, I have a lot to learn on this subject.....learned a lot about MM, now I need to continue the education.

The doc did say that the collarterals are their just to get the right amount of blood to the brain. Based on the CT-Perfussion study and my TCD, the left side is getting all of the blood that it needs, just with a slight time delay over the right side.

So, until I hear from the doctors in NYC, the current treatment plan is to remain on plavix to keep the blood flowing (ok to keep the platlets from sticking) and routine TCD's or CT-Perfussion studies to keep an eye on the blood flow to make sure that everything is still getting there (in other words generate a good base line for future comparisons). Also requesting MRA's to make sure that they can see the arteries.

They are not recommendign stents at this point in time, as the doctors are not aware of stenting being done on a cerebral artery with a disections (and lucky for me, my docs don't want to be the first to attempt...just in case something goes wrong  Smiley). They also do not recommend any by-pass surgeries at this time, but would recommend if the blood flow worsens, TIA's occur or I start rejecting plavix. (Sounds a little like a CYA statement to me).

Lets just say, that I am not going to sit still. I'm waiting for my NYC doctors to confirm or offer other suggestions. And, yes, the films will be sent to a few other doctors for more opinions.

The game is not over...its just starting....

Today, I am home relaxing, and enjoying the beautiful weather.......

Greg
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I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.
 
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lotsofkids
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Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female
Re: Angio is over - home relaxing
Reply #4 - Jun 22nd, 2007 at 11:38am
 
Hmmm...a lot to think about. It'll be interesting to see what the NYC docs have to say.

Sorry about those hits to the head...ouch!

Glad to hear you "do" have perfusion to your brain. My spect scan said "no vascular reserve!"...guess my collaterals were being maxed out..LOL

But....overall it seems to me...you are right here where you belong ....with this crowd of dizzyheads and occluded coratids! So glad to have you with us!

best regards..Diane : )
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Hmmm....seems I'm kinda "special" LOL
 
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moody
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In all the thing I lost
I miss my mind the most.

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richmond, USA, VA, Virginia
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Re: Angio is over - home relaxing
Reply #5 - Jun 22nd, 2007 at 10:41pm
 
Hi Greg, I'm glad you have that angio done, hope you hear from doctor soon, keep inform when you have result.

Kieu
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Yesterday is past, tomorrow is future, today is the gift, that why we call it present.
 
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moyamoi
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Re: Angio is over - home relaxing
Reply #6 - Jun 23rd, 2007 at 12:55am
 
Hi Greg,

I am relieved to hear that you do not actually have MM as such and are on top of discovering what is really going on - I personally have every confidence that you will get to the bottom of what is going on and successfully resolve it, then all you'll have left to worry about is the state of that motorbike of yours and when it is going to get back on the road so that  you can go putting off with Olga around all that beautiful countryside in Upstate New York!!
Thanks for the birthday wishes -
Thoughts are with you
Moira
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Greg-NJ1
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Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male
Re: Angio is over - home relaxing
Reply #7 - Jun 23rd, 2007 at 11:38am
 
Moira,

The motor biek is up and running. This past Saturday, I actually bit the bullet, got the bike running (again) and went for my first long ride in nearly four years. Actually its only my third ride in four years, but the first two were only around my block. Saturday's ride went for nearly an hour, however, I was never more than a few miles from home as I kept driving in circles just to be "safe". But I will say, it felt SOOOOO GOOD to be back on the bike.

Although I did enjoy the ride, it did remind me of the many good motorcycle rides....and it also reminded me that this was the first time that Olga has seen me ride it. I think she was more neverous than I.

Keep the sunny side up,
Greg
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I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.
 
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