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Greg-NJ1

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Great News....Sort of
Jan 21^st, 2006 at 11:30am

Hi all

,

Thank you for the wonderful response to my post on Thursday. Thing got so bad after I posted, I jumped a cab to Columbia Presbiterian. Yes, I know, it should be an ambulance, but the ambulance would have taken me to the local hospital and not Columbia. I was immediately admitted to the ER (espeically when you mention MM and stroke and that you are a patient of two of their leading doctors).

After a couple of quick neurological work ups....off for a Perfussion MRI/MRA....which luckily showed no signs of stroke.....and after spending 17 hours in the ER (no bed space), I was finally admitted into the Neuro ward (Tom, your right, great views of the Hudson River and NJ).

First thing yesterday (Friday) morning, Dr. Marshall came in a said hello and what my day was going to be like. You may also recall some of the issues that I had tryng to get the Cerebral Angio covered as an out patient. Well, there were no issues when it comes to an emergency.....So needless to say a few hours later, off I was in the hands of Dr Meyers...

Man was it a busy day...I think I met every Dr and Intern in the Neurology and Neurosugery departments. Well, my three doctors sat down with everyone and reviewed all of my test results.

And the GREAT news......After everthing that we have been through this year.....the final diagnosis is that I DO NOT have MM Smiley

. Angio showed no MM vessels....but it did show the same restriction that was seen on all of the other tests..also show two good size and great shape vessels that have grown to help with the blood flow (hence the confussion with the CT-A).

Well, that was a few minutes relief, before they reminded me that I do have a significant restriction to the left MC that is giving me TIA symptoms Sad

. Although they have not rulled out surgery in the long term, they want to review what other options that we have. I'll be meeting with the doctors in a few days to discuss long term treatment.

So the good news, no MM.....but the bad news is that that there may still be a long road ahead.

Does this mean that I am going to get kicked off of the site? I hope not, because you have all been absolutely wonderful. Smiley

Princeton gang, sorry about not gettng the pictures out, but now you now why...

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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Helenor New Poster Offline Posts: 23 Folsom, USA, usa, 35, 148, CA, California Gender:	Re: Great News....Sort of Reply #1 - Jan 21^st, 2006 at 12:10pm It's great to hear that you don't have MM. I hope everything goes well for you in figuring out the right treatment.
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tomg Experienced Poster Offline West and wewaxsation at wast. What I crave. Posts: 216 HowellNJ, USA, usa, 499, 119, NJ, New_Jersey Gender:	Re: Great News....Sort of Reply #2 - Jan 21^st, 2006 at 9:53pm Great news Greg! Jeez I know that MM is tricky to diagnose but yours is one for the books ; Keep us posted on how they will deal with the constricted artery. Take care Tom
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gotchlorine

Old-Time Poster

Offline

Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: Great News....Sort of
Reply #3 - Jan 21^st, 2006 at 10:03pm

Greg,

I'm speechless - something that doesn't happen very often!!!!!! Yes, great news that it's not MM, and so-so news that you're not certain of what lies ahead. Believe me, we'll be saying prayers that it's nothing too difficult.

No, you will absolutely NOT be kicked off the site! Like it or not, you're "one of us" (this may be good and bad), and we'll stand by you for anything you have to go through!

No problem with the Princeton pictures - you'll get them disseminated when you're feeling up to it, I'm sure!

Big hugs to you and Olga,
Jill

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Seachelles

Old-Time Poster

Offline

God never gives us more
than we can handle.

Posts: 681
Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female

Re: Great News....Sort of
Reply #4 - Jan 22^nd, 2006 at 8:26am

Greg!!!

This is absolutely great news!!!! I'm so happy for you. And no....you CAN'T leave this board! You are a part of this family whether you like it or not!!!

I wish you the best of luck in your journey now trying to find the answers to what is going on with you now. I will continue to keep you in my thoughts and prayers. I know the unknown is not easy.

Hugs to both you and Olga,
Michelle

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Michelle

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STrantas

MM.com Benefactor

Offline

MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: Great News....Sort of
Reply #5 - Jan 22^nd, 2006 at 11:38am

Greg -

Well, great news that it's not MM! But that left me wondering - What the Heck Is It!!?!?!?! This would make me completely frustrated if I were in your situation. But, after meeting you, you have an amazing attitude towards getting to the bottom of this and getting it fixed - whatever "this" may be!

I wish you all the best in this adventure! PLEASE do not leave this board! You and Olga are such an inspiration to us all in how you've handeled this! Hugs to you and Olga! Smiley

-Shari

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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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Shan

Old-Time Poster

Offline

MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Great News....Sort of
Reply #6 - Jan 24^th, 2006 at 10:27am

Greg,

AMEN! Absolutely wonderful news! Although, I was sad to hear the circle of events that led up to it. All in all... Big Smiley

s to you!!!...and Olga too! Wow! Well, continue to do what you're doing. Be assertive to make sure that you're receiving the best possible care available to you. You know that regardless of what you have/face, we are here for you! You can't get rid of us now! Wink

hee hee... You have been a tremendous support to me!

Thanks again, Greg, for sharing the wonderful news. I think this calls for a vacation for you and Olga to come to Hawaii! Wink

(oh, and bring Tom with ya'...in your suitcase)

Take care,
Shan

p.s. Do you really look like Charlie Brown when you wear your baseball hat... I'm still waiting for the Princeton pics. hee hee

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« Last Edit: Jan 24^th, 2006 at 10:30am by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Greg-NJ1

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Re: Great News....Sort of
Reply #7 - Jan 24^th, 2006 at 4:18pm

Hi All,

I finally had my follow up conversation with Dr. Marshall.

As expected, based on my conversations after the Angio, it is NOT MM. And as expected, there is a SIGNIFICANT restriction in the artery. Based on the MRA/CT-A and the Angio, it appears that the blockage is physical damage and not arterial hardening and/or cholesterol related.

So, the new plan of attack is:

1) Short term treatment with drugs (thinners and anti-platlet/coagulators) to see if controling the blood helps with the blood flow.

2) TCD w/ CO2 in 3 to 6 months to see if #1 works

3) Potential treatment with steriods (most likely not an option)

4) If the above fails, potential for angioplasty and or shunt (also most likely not possible due to location and risk)

5) EDAS or STA-MCA bypass........as the Drs. said, this is a blood flow issue....and we will need to correct the blood flow.....based on today's conversations, I'm not expecting that they would do the surgery for at least a year.

I'll keep you posted, as I have to follow up with my regular Neuro.....

Shan,

As for my Charlie Brown resembalence, I'll let Shari answer that one.....Shari, be honest, I don't mind.

Greg

PS....they also want me to keep a journal indicating time/duration of any symptoms and what I was doing/feeling at the time of the symptoms.

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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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tiomasai Experienced Poster Offline Arriba Arriba! Posts: 246 Queens, NY, Gender:	Re: Great News....Sort of Reply #8 - Jan 24^th, 2006 at 8:19pm Greg: I hope the plan of action works out, at least you have something you can work with now. Do keep us posted. You, and Olga, will always be in my thoughts. Shan: I can only tell you that my first reaction to meeting Greg was 'YOU REALLY DO LOOK LIKE CHARLIE BROWN!!!!!!!' Trina
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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: Great News....Sort of Reply #9 - Jan 24^th, 2006 at 9:09pm ; Thanks for the confirmation, Trina. ; Greg, you're too funny... Don't worry, though, people call me Linus because I have a "blankie" Take care, Shan
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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Great News....Sort of
Reply #10 - Jan 25^th, 2006 at 11:20am

Hi Greg,

Truly GLAD to hear that you don't have MM. However,
I'm with Shari. What the heck is it???!!!

Whatever it is it truly appears to mimic MM. Are they absolutely sure those vessels aren't MM collateral vessels? Just wondering.

Perhaps your mystery case is one for the Discovery Health Channel. Did they actually give you a diagnosis?

As for the board. You and Olga are here to stay. You have brought great conversation to this board and we are indebted to Olga for her getting the message out about MM.

Please keep us posted as the mystery unfolds. Your case is like reading a mystery novel as it keeps taking twists and turns. I'm sure it is frustrating for you. Do you feel like you're on a roller coaster?

Hang in there!

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

Experienced Poster

Offline

Mis-diagnosed with MM
in 2005, arterial restricion

Posts: 248
Teaneck, NJ
Gender: male

Re: Great News....Sort of
Reply #11 - Jan 25^th, 2006 at 3:36pm

Hi Lore,

I spoke with all of the doctors again late yesterday afternoon. from what they are saying, I have a restrition on my left MCA that they do not believe is related to palque or cholesterol. Rather, they are thinking that it is some form of damage to the actual artery. They indicated that it could be from before birth and/or it could be a result of any blow to the head.

I also asked about the "by-pass vessels". They indicated that they are two colaterial by pass vessels that are a good size and do not show signs consitant with MM.

So, who knows....I'm doing my best to make sure that they do not forget me, as I just scheduled my next 6 months of follow up appointments with the various doctors.

I'll keep everyone posted,
Greg

PS...thanks everyone for including the wonderful comments about Olga. She has been my personal goddess this past year. I'm not sure if she knows how wonderful she is....but I do, and thats all that matters.

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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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