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fortunegirls

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Posts: 17
Boyne City Michigan
Gender: female

Anyone from Michigan Out There??????
Nov 29^th, 2005 at 8:57am

Hi my name is Lorie. I was diagnosed with MM in 11/2003. I had my first bypass and EMS 12/2003 and have been symptom free until the past six months. My right side is catching up with my left now and I'm scheduled for my second bypass and EDAS on 01/09/06 at U of M with a Dr. Thompson. I'm trying to find out if there is anyone with MM from Michigan who has been treated/operated on by Dr. Thompson or anyone from U of M for that matter. My first surgeon was Dr. Diaz from Harper Hospital in Detroit and so I'm not real familiar with U of M. I've heard nothing but great things about them and Dr. Thompson but I would like to hear from any of you as well. Please respond. Thanks. Lorie

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cubbie

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MM.com Benefactor

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Stanford MM Survivor,May
2005

Posts: 168
Delaware, USA, usa, 418, 133, OH, Ohio
Gender: male

Re: Anyone from Michigan Out There??????
Reply #1 - Nov 29^th, 2005 at 9:58am

Hi Lorie

I was diagnosed by Dr Greg Thompson at U of M Ann Arbor on Febuary 2000,at the time I had a disected right upper cortid artery,totaly occluded.
They did a Xenon CT and found that CBF with reserves on the left side.
At the time Dr Thompson was performing EC-IC type surgery.
Sorry that is all I know!
My sister may be able to give you more info(site name Lore)
P.S. I had my Moyamoya surgery by Dr. Steinberg at Stanford,There is a lot of information here and helpful people to respond!

Welcome to MM.com

Kevin

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« Last Edit: Nov 29^th, 2005 at 10:26am by cubbie »

Kevin Allen- I was so much older than,I am younger than that now,The Byrds,My Back Pages

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Lore

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My brother Kevin (Cubbie)
has Moyamoya

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

Re: Anyone from Michigan Out There??????
Reply #2 - Nov 29^th, 2005 at 12:52pm

Hi Lorie,

I'm Kevin's (Cubbie) sister. We live in Ohio about 25 miles north of Columbus. We have a cousin that graduated from U of M and our cousin's daughter is currently at U of M.

Kevin went misdiagnosed for a long time after having a significant stroke. Kevin was initially diagnosed with FMD (Fibro Muscular Dysplasia) while living in Florida. That's how we made it to U of M. Dr. Stanley is an expert in FMD. Dr. Thompson, Dr. Stanley and Dr. Sanjay Gupta at U of M diagnosed Kevin with a totally occluded dissected right upper internal carotid at the bifurcation. At that time, Dr. Thompson thought Kevin might require bypass surgery (EC-IC) but determined Kevin to have enough blood reserve at the time not to do the surgery even though Kevin was having TIA's. Adjustments were made to meds that lessened the TIA's. There was no evidence of moyamoya vessels at that time which was in January of 2000.

U of M is a hugh Trauma Center. Dr. Thompson is an excellent Neuro with impressive credentials. We really like him and Dr. Stanley and U of M treated us exceptionally well. I have to give Dr. Thompson credit in that he was prepared to do a bypass even without a diagnosis of moyamoya which told me he is an aggressive doctor and was willing to do the bypass based on Kevin's TIA's and stroke.

4 years later, in May of this year, Kevin utlimately had two direct bypasses at Sanford by Dr. Steinberg. This was after Kevin had gotten significantly worse and when the diagnosis of MM was given in Ohio, no doctor in Ohio and other states would take Kevin on for surgery nor were they familiar with MM. They all sent him home to live out whatever life he had left. That's when we found this web site and Dr. Steinberg at Stanford and we are eternally grateful for the web site and finding Dr. Steinberg. Dr. Steinberg is an expert in MM. I believe Dr. Steinberg and Dr. Stanley know each other.

What I don't know is how familiar Dr. Thompson is with MM? I'm not a doctor but what I have learned through my dealings with this disease is ithat it is important to not only have the correct surgery for your particular situation but also the anesthesia is very important. Did you have a direct bypass or EDAS surgery the first time at Harper Hospital in Detroit?

Feel free to e-mail me if I can be of more assistance with MM and/or U of M.

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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fortunegirls

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Posts: 17
Boyne City Michigan
Gender: female

Re: Anyone from Michigan Out There??????
Reply #3 - Nov 29^th, 2005 at 1:10pm

Hi Lore!

Thank you sooo much for responding. I'm so pleased to hear that you had a pleasant experience with U of M and that your brother is doing well.

I had also heard that anesthesia is very important and I already have an appointment the day prior to my surgery to meet with them as well. My understanding is that my blood pressure will have to be kept very high during the surgery because of MM being present, blood flow and the extended length of surgery.

My first surgery was at Harper Hospital in Detroit and was with Dr. Diaz in which I had a STA-MCA Bypass and EMS. It was a 8.5 hr surgery and they sent me home with 56 staples in my head (Ouch!! They felt like industrial ones Smiley

and had to be left in 12 weeks).

Again, thank you so much for responding and if you know of anyone else with MM and has had an experience with U of M or Dr. Thompson please let me know. As all of us do, I'm trying to gather as much information as I can about them.

I am sooo happy ; Grin

that I finally decided to join this family. Thanks everyone!!

Best Wishes, Lorie

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kathy_a

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I love YaBB 1G - SP1!

Posts: 17
lansing, USA, usa, 388, 97, MI, Michigan
Gender: female

Re: Anyone from Michigan Out There??????
Reply #4 - Nov 29^th, 2005 at 8:00pm

Hi Lorie!
I was diagnosed with MMD in July of last year. I am from Lansing and I was sent to Harper Hospital by ambulance to consult with Dr. Richard Fessler, who did my surgery in Oct. of 04. It was only on the right side. I had 2 strokes prior to surgery and then 2 strokes during surgery due to a drop in BP. By the grace ofGod go I. So far, so good! It is good to here from another
Michigan friend.Take care. Hope to hear from you.

kathy a

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fortunegirls

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Posts: 17
Boyne City Michigan
Gender: female

Re: Anyone from Michigan Out There??????
Reply #5 - Nov 30^th, 2005 at 10:59am

Hi Kathy!

I was actually born and raised in Lansing myself. Just moved my family to northern Michigan about 5 years ago (time for a change). What area are you from? How about a last name? May be a slim chance we know eachother (or not).

Were you pleased with Fessler's office and Harper Hospital? I was very confident in their skills and very pleased with my surgery but I felt they both (Diaz/Fessler's office and Harper) could work on their bedside manners. When it came to the office and hospital, it was clear to me that we were just a number. But Dr. Diaz pulled me through with flying colors and here I am today. I thank him and God all the time!!!! Glad to here you pulled through as well, sorry to hear you had to suffer additional strokes though. Well it sure it nice to have a Michigan friend. Keep in touch.
Best wishes, Lorie Smiley

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kathy_a New Poster Offline I love YaBB 1G - SP1! Posts: 17 lansing, USA, usa, 388, 97, MI, Michigan Gender:	Re: Anyone from Michigan Out There?????? Reply #6 - Nov 30^th, 2005 at 12:41pm Hi Lori, Actually I came all the way from West by gosh Virginia but have been in Lansing for 30 years.Currently I live on the South Side but lived on the west side for years.I also taught Head Start for 25 years here in Lansing. My last name is Lilly but was Whitaker for about ten years. kathy a
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kathy_a New Poster Offline I love YaBB 1G - SP1! Posts: 17 lansing, USA, usa, 388, 97, MI, Michigan Gender:	Re: Anyone from Michigan Out There?????? Reply #7 - Nov 30^th, 2005 at 12:43pm Oops! By the way Lori, I really liked Dr. FesslerHe is brilliant once you get through the arrogance. kathy a
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fortunegirls New Poster Offline Posts: 17 Boyne City Michigan Gender:	Re: Anyone from Michigan Out There?????? Reply #8 - Nov 30^th, 2005 at 4:32pm Hi Kathy! I also grew up and lived on the west side. I ran a group day care for 12 years. Small world, huh. I'm afraid I don't recognize your name but I do know a Gary Whitaker, somewhere around 30 years old, came from Potterville. Any chance you know him? Lorie
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kathy_a New Poster Offline I love YaBB 1G - SP1! Posts: 17 lansing, USA, usa, 388, 97, MI, Michigan Gender:	Re: Anyone from Michigan Out There?????? Reply #9 - Dec 2^nd, 2005 at 12:21am Lori, There's no relation but there must be tons of Whitakers in Potterville and Grand Ledge . Alot of people ask that question. Do you know a sue and Joe Martinez?I worked with Sue for years at Head StArt. kathy
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fortunegirls New Poster Offline Posts: 17 Boyne City Michigan Gender:	Re: Anyone from Michigan Out There?????? Reply #10 - Dec 2^nd, 2005 at 8:29am Hi Kathy, Sorry I can't say I know Joe and Sue Martinez. But it was still nice chatting with someone from my home town. I'm sure we'll chat again. Best wishes, Lorie
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