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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Major Bleed One Year After STA-MCA Surgery!

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Major Bleed One Year After STA-MCA Surgery! (Read 14803 times)

calee

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Wyalusing, USA, usa, 480, 105, PA, Pennsylvania
Gender: female

Major Bleed One Year After STA-MCA Surgery!
May 22^nd, 2009 at 11:23am

Tommy (29 years old) had STA-MCA Surgery on his right side at Stanford University in CA on April 2, 2008 that went very well. Tom had a 10-month checkup the end of January beginning of February that also went very well. They did find a tiny aneurysm that was going to be checked this August in Danville PA with an Angiogram and sent to Dr Steinberg for his review and then back to Stanford in February 2010.

Well, on May 7, 2009 Tom went to visit a friend in Rochester NY for Mother’s Day Weekend he called early Saturday morning (5:20am) and told me that he had a horrible headache and was going to ask his friend to take him to the emergency room. Rob wound up calling an ambulance, by the time the ambulance arrived he was slurring his words, by the time he arrived at the hospital he was in a coma. Rochester General sent him to Strong Memorial who in turn “waited” for us to arrive. At that time they said that the CatScan showed a catastrophic brain hemorrhage and that we should think about his quality of life before deciding what to do. In other words we felt they were leaning toward doing nothing. We decided to follow our hearts and have them operate to relieve the pressure and around 11:00am Tommy went into surgery for a Craniotomy. The doctors here give Tommy a 5% chance of waking up and don’t think his quality of life will be anything like what it was before.

We had Tommy’s scans and records from Strong Memorial overnighted to Stanford to be reviewed by Dr Steinberg and his team. They seem to think that Tommy has a chance, baring any complications, of walking away from this with a little weakness on his left side. How could two different teams of neurosurgeons have such different predictions?

As for complications, Tommy has a pneumonia that they have been treating for almost a week with antibiotics that are not working. They did a bronchial procedure yesterday evacuating more than two cups of secretions that they are testing for a more specific strain and have changed his medication.

We still have hope and faith that Dr Steinberg is right . . please pray for Tommy! Thank you in advance . . Carol Barnes, Mom.

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Christie Junior Poster Offline daughter with moyamoya Posts: 75 Burnside IL	Re: Major Bleed One Year After STA-MCA Surgery! Reply #1 - May 22^nd, 2009 at 11:34am My heart goes out to you! I will keep you all in my prayers. Dr. Steinberg and his team are the best. Christie
Back to top	1st stroke april 2008 1st surgery Nov. 5 2nd surgery Nov. 18 Still recovering from strokes IP Logged

Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Major Bleed One Year After STA-MCA Surgery!
Reply #2 - May 22^nd, 2009 at 12:55pm

The hospital experiance was unaceptible with your son Robert. Does he carry around a medical ID or have a Medical ID bracelet. I have the walet ID for now I am looking at bracelets so the infromation is always on me.

With that aside your question on why the diffrences: it is because Dr.Stineberg is a MoyaMoya (MM) expert, the other doctors are treating Robert as a nonMM pacent. What the other doctors dont realy know is how special MM is and how even is we have a stroke or something we can have a higher chance of recovery with minmal defects because the MM has blessed us with alternitive blood flow paths.

I am so happy to hear that you did send all of Rob's info to the MM expert Dr.Stineberg!! He should instruct the other doctors on what to do and what not to do, and give you a better picture of his recovery.

I will pray for Robert to have a speedy recovery to full health, and for you to have the strenght to get through this rough patch. Please keep us posted on his progress.
Becky

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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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: Major Bleed One Year After STA-MCA Surgery!
Reply #3 - May 22^nd, 2009 at 9:55pm

Calee,

My heart goes out to you.

When my brother was in bad shape and all the local neuro's sent him home to live out whatever life he had left (those are their words), Dr. Steinberg took on my brother's case and performed two successful STA-MCA's on my brother in 2005.

When the MM collateral vessels picked up the blood flow and the blood spilled into the brain, Dr. Steinberg took care of that immediately. My brother could not speak and had no abstract thinking ability. Within a year, my brother was talking and had regained his abstract thinking. Dr.Steinberg said my brother would get better and although I couldn't imagine such a thing, he was right.

I have all the faith in the world in the Stanford team. They have the knowledge, experience and wisdom to deal with all types of brain disorders. They saved my brother's life and have been very good to me and my brother and even when my brother had his latest episode, they were right on it. Their knowledge and expertise in the treatment of MM and all things brain and neuro related is superior.

I believe the difference in opinions is the difference in knowledge and experience and especially with MM disease as a factor. My brother's local doctor consults with Stanford whenever he has questions or gets a MM patient simply because of the rarity of the disease and the fact Stanford is known for their expertise in the treatment of MM and related brain disorders.

My brother experienced the negatives of a medical opinion and he experienced and lived the positives of an expert opinion with quality of life.

Please know you and Tommy are in our thoughts and prayers, you have our love and support and know we are here for you and Tommy.

Please keep us posted.

Hugs,

Lore

"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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KTiller

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Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: Major Bleed One Year After STA-MCA Surgery!
Reply #4 - May 22^nd, 2009 at 10:30pm

Carol, 'm so very sorry to hear of Tommy's troubles. I'm betting that Steinberg's team has the right take on his condition and probability of full recovery is very good. They've seen a lot of what this Moyamoya can do, I'd place my bet with them regarding his prognosis.
Tommy and your family are in my prayers.

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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #5 - May 23^rd, 2009 at 12:16pm Carol~~~~ Sending love to you and Tommy. Ditto everything that's been said her. I just send love and support, I'm a two major stoke survivor, plus surgery with Steinberg in 2000. doing well now. Not like I was, but really well. and glad to be able to send support to you. Linda
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Lmom Junior Poster Offline I Love MM.com! Posts: 53	Re: Major Bleed One Year After STA-MCA Surgery! Reply #6 - May 24^th, 2009 at 6:01pm Best of wishes for a full recovery for Tommy! Jody
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #7 - May 25^th, 2009 at 7:53am Carol, my thoughts are with Tommy, you and your family. This must be extremely difficult for you. You must keep faith and I echo what many have said here before me, you are in great hands with Dr Steinberg. Stay strong Mark (Luca's Dad)
Back to top	1st stroke in September 2008, age 10 months Bi-lateral mm diagnosis 2nd stroke in November 2008, age 1 year old Left side surgery in December 2008 13 years on now Doing just great! IP Logged

mc823923 Junior Poster Offline My dauaghter Annamarie lives with mm Posts: 83 Baton Rouge, USA, usa, 345, 271, LA, Louisiana Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #8 - May 25^th, 2009 at 3:02pm Carol, Sorry to hear about Tommy. we met at Stanford after Tommy's surgery. My daughter Annamarie had her surgery on the 15th of April. I will keep Tommy in my prayers, he has a good team keeping us with him. Keep us posted on his progress. All my love, Margaret
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NEME New Poster Offline I Love MM.com! Posts: 10	Re: Major Bleed One Year After STA-MCA Surgery! Reply #9 - May 25^th, 2009 at 4:35pm I am so sorry. Hope he is better now, please let us know how he is doing. We will be praying for him. Tunde
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Reagan Junior Poster Offline Posts: 75 Lee's summit, USA, usa, 302, 159, MO, Missouri Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #10 - May 25^th, 2009 at 8:03pm Carol, My thoughts and prayers are with Tommy and the rest of the family. Speaking from experience, I feel at total peace in Dr. Steinberg's hands. Please keep us posted. Reagan
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calee

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Wyalusing, USA, usa, 480, 105, PA, Pennsylvania
Gender: female

Re: Major Bleed One Year After STA-MCA Surgery!
Reply #11 - Jun 11^th, 2009 at 2:03pm

Well, Tommy is doing well, he will be moved to rehab within a few days, closer to home! We've been here for almost five weeks now and the progress has been slow but sure. He looks good, had a bout with pneumonia and still has a low grade fever on and off. The fever is not from an infection so they are thinking it is coming from his brain. He still has swelling and is coming out of his coma, hasn't tryed to talk to us yet but he's making lots of purposeful movements and starting to follow commands. This is going to be a really long process but thankfully we still have Tommy around! I'll keep you all posted as he progresses. Smiley

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KTiller Senior Poster Offline Posts: 355 Freeland, USA, usa, 51, 28, WA, Washington Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #12 - Jun 11^th, 2009 at 7:03pm Fantastic news, Carol. He's a fighter. It may take time for all the healing, but thankfully your Tommy is young and strong. Can't wait to read the post telling us that he's talking again and up and about. Kim
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #13 - Jun 12^th, 2009 at 2:46am I am thrilled to hear Tommy is moving in the right direction. He has a very strong will to survive and with you at his side I'm sure the progress will continue. Stay strong Mark (Luca's Dad)
Back to top	1st stroke in September 2008, age 10 months Bi-lateral mm diagnosis 2nd stroke in November 2008, age 1 year old Left side surgery in December 2008 13 years on now Doing just great! IP Logged

PaulaMart Junior Poster Offline I Love MM.com! Posts: 84 Spain Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #14 - Jun 12^th, 2009 at 4:21am Hi Carol, I'm glad that Tommy is improving. Altough it's being very difficult, with time, his brave and your strength, everything will go well. All the best.
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Becky Old-Time Poster Offline Stroke10/03, Diagnosed6/04, Unilateral Surgery9/04 Posts: 532 Minneapolis, USA, usa, 303, 84, MN, Minnesota Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #15 - Jun 12^th, 2009 at 12:16pm Carol That is great news!! I am so Happy to hear Tommy came out of his coma!! Please keep us posted with all of his progress. Becky
Back to top	What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic IP Logged

Danielle Junior Poster Offline 3 year old daughter with Moyamoya disease Posts: 71 Michigan Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #16 - Jun 13^th, 2009 at 11:47pm Carol, I hope having him closer to home is helping you out a bit. Hang in there MOM. I will pray for you both. I can't wait to read more good news. Thanks for sharing. Danielle
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calee

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Posts: 18
Wyalusing, USA, usa, 480, 105, PA, Pennsylvania
Gender: female

Re: Major Bleed One Year After STA-MCA Surgery!
Reply #17 - Jun 21^st, 2009 at 5:06pm

A quick update on Tom! He’s doing wonderful! He knows his family and friends, he’s talking with the smallest size trac and plug, he’s sipping gingerale, wrote his name and “MOM” on a sheet of paper with a marker, and best of all said, “Happy Father’s Day Dad!” on the phone this morning. He has a long, long way to go but boy does our family feel blessed! Thanks for all the prayers and please keep them coming!
Love,
Carol

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gotchlorine

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Our daughter, Tara, lives
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San Jose, USA, usa, 24, 158, CA, California
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Re: Major Bleed One Year After STA-MCA Surgery!
Reply #18 - Jun 21^st, 2009 at 7:25pm

Wow Carol! Father's Day, Mother's Day, Christmas, Easter and every holiday all wrapped up into one! Your update makes my heart smile, but I'm not surprised, knowing Tommy. He comes from good, strong stock, he's a determined young man, and I have no doubt he'll continue to improve. A long road is o.k., what's important is that he's with you and you are seeing changes for the positive.

Thanks for the update - I'll check in with you this next week for a new one. Hugs to all of you, and the prayers will definitely continue coming from out west!

Smiley

Jill

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cass/kate Experienced Poster Offline Daughter Kate has moyamoya. Posts: 247 Dallas, USA, usa, 270, 251, TX, Texas Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #19 - Jun 21^st, 2009 at 8:55pm Carol - This is wonderful news about Tommy. You are on my heart and in our prayers here in Texas. Hugs, Cass
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #20 - Jun 22^nd, 2009 at 3:12am Fantastic. I got goose-flesh! Tommy is one tough customer! Stay Strong Mark (Luca's Dad)
Back to top	1st stroke in September 2008, age 10 months Bi-lateral mm diagnosis 2nd stroke in November 2008, age 1 year old Left side surgery in December 2008 13 years on now Doing just great! IP Logged

Becky Old-Time Poster Offline Stroke10/03, Diagnosed6/04, Unilateral Surgery9/04 Posts: 532 Minneapolis, USA, usa, 303, 84, MN, Minnesota Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #21 - Jun 22^nd, 2009 at 1:11pm Way to go Tommy!!!!! Childern are amazing!!! Becky
Back to top	What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic IP Logged

LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #22 - Jun 22^nd, 2009 at 1:16pm Carol~ Wonderful news! I'm happy for Tommy and for all of you. Sending my love and support. Linda (LA)
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PaulaMart Junior Poster Offline I Love MM.com! Posts: 84 Spain Gender:	Re: Major Bleed One Year After STA-MCA Surgery! Reply #23 - Jun 23^rd, 2009 at 3:46am Carol, this is the best new I could read today in this site. I'm so happy .... Paula
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calee

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Wyalusing, USA, usa, 480, 105, PA, Pennsylvania
Gender: female

Re: Major Bleed One Year After STA-MCA Surgery!
Reply #24 - Jul 27^th, 2009 at 9:33am

Hello everyone! Tom is doing terrific at John Heinz Rehab. What a wonderful place! These angels have him talking, sitting up, sitting on the edge of the bed feeding himself, using the bathroom, moving himself around the big gym in a wheelchair with his right leg and arm and transferring himself from the wheelchair to the bed and back. His left side moves when he’s sleeping and is painfully sensitive. We have been starting to see some involuntary movement in his left foot that he insists isn’t his doing, same with his left hand. His spirits are good but he tells everyone he feels like he’s in jail. What a field! Young beautiful women, nurses, physical therapists, occupational therapists and speech therapists surrounding him. He’s enjoying that part! All in all we couldn’t be happier, keep the thoughts and prayers coming and we’ll be in touch soon! Carol – Tom’s Mom

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