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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Not MM- CT Perfusion - Cerebral Stents

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Not MM- CT Perfusion - Cerebral Stents (Read 3232 times)

Greg-NJ1

Experienced Poster

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Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Not MM- CT Perfusion - Cerebral Stents
May 7^th, 2007 at 6:41pm

All,

I just had a second opinion with Dr. B. in NJ. He has completed the review of all of my testing and confirmed that it is not Unilateral MM. He has confirmed the stenosis of the Left MCA-M1 segement.

He has requested the following tests to make sure that things are not "getting worse".

- CT-Angio (no big deal, suffered through this one before)

- CT Perfusion Study (I don't know jack about this one, can anyone shed some light on this, how long it takes, whats involved, etc).

Pending the results of the above, he is recommneding a that I have a Angioplasti and a Cerebral Stent placed in the M1 segment. Have any of you heard anything about this, new studies, success rates, chance of stroke during process, etc.

He will be following up with Dr. Marshall to discuss his thoguths before we move forward.

As always, any and all feed back is welcome.

Thanks,
Greg

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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tuknits

Junior Poster

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Posts: 67
Batavia, IL
Gender: female

Re: Not MM- CT Perfusion - Cerebral Stents
Reply #1 - May 8^th, 2007 at 9:58am

Greg,
Don't really know what to say about this one. When you are dealing with your health and one doctor's opinion versus another, things get kind of sticky. Since I don't know your history, am not a doctor, etc., etc... I hesitate to give my opinion so I'll just tell you what happened to me. Take from it what you will.
After a bunch of diagnostic tests (including CT angio), I was told that it could be unilateral MM but they doubted it - thought it was just a stenosis of the left MCA. They wanted to go in with a micro catheter and place a stent. I wasn't sure about it and sent my films to Dr. Steinberg. He said it was absolutely MM and to place a stent could be very dangerous choice. After conferring with my local neuros, they agreed with Dr. Steinberg and I had a left STA-MCA bypass.
Unfortunatley, you have been down this road before and know that misdiagnosis happens all too often because docs just don't have enough experience with MM. All I can say is do what you believe is right for you in your heart of hearts. I had a bad feeling about the stent choice for me even before I had a second opinion. It just didn't feel like the right thing and I wasn't confident with the team of docs I had. I chose to go a different route. Listen to what everyone has to say, get as many second (third, fourth...) opinoins as you need and in the end, do what you think is right for you.
I'll keep you in my thoughts.
Peace to you-
Tracey

The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart. - Helen Keller&&

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Greg-NJ1

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Re: Not MM- CT Perfusion - Cerebral Stents
Reply #2 - May 8^th, 2007 at 7:49pm

Tracey,

Thanks for your story. Amazingly similar too mine. I'm right there with you....the risk associated with stenting didn't (in my eyes with limited knowledge) seem to balance the risks (but need to do a lot more research before I can commit either way).

Needless to say, yesterday was yet another opinion (and we all know what they say about opinions, everyone has one...)...its just one more bit of knowledge that we must seek out before making our decisions.

Now it is on to the next doctor for the next opinion.

Greg

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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Islandentity

Experienced Poster

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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male

Re: Not MM- CT Perfusion - Cerebral Stents
Reply #3 - May 9^th, 2007 at 12:03am

Greg, when Robert was disagnoised with MM 3.5 years after he first started having TIA's we sent his films to 8 doctors we selected from this site to see what they thought......................Got mixed reactions, as to what surgery todo and ended up going with Dr. Steinberg........Hope it helps..............On of Roberts earliest dx was a possible anyeruism in the communicating atery, as it turns out that was a helthy vessel between to collapsing vessels(i think) any how it all boils down to doing whats right and best in your mind. educate yourself and advocate for your own well being.

Mike

BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin

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Greg-NJ1

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Re: Not MM- CT Perfusion - Cerebral Stents
Reply #4 - May 9^th, 2007 at 8:00pm

Ok...new insite....Dr. B followed up with Dr. Marshall. They have both agreed that having the CT-A and the CT-Perfusion studies are an EXCELLENT idea. I'll be calling to schedule my appointment tomorrow morning. I'm sure they will get me in quickly (assuming no precertification issues)....

Question....has any one had a CT-Perfussion study. What does it intail and how long does it last....

I've already had the CT-A....and the "wonderful" burning sensation associated with that....

Thanks for the feed back,
Greg

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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Greg-NJ1

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Re: Not MM- CT Perfusion - Cerebral Stents
Reply #5 - May 21^st, 2007 at 6:57pm

Well, the CT-Angio and the CT-Perfussion study were both completed late Friday afternoon. Both tests went well....except for a major headache Friday evening into Saturday. Doctors forwarned that it might happen due otthe diomox (my first time with Diomox).

Well, now it is the waiting game as I wont be getting my test results until late this Friday afternoon. It was the first appointment that my Dr. had open...(must be a busy surgery week).

I am now keeping my fingers crossed...other than that, I am feeling great....

Greg

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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