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.

My heart goes out to you! I will keep you all in my prayers. Dr. Steinberg and his team are the best.
                          Christie

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

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

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.

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

Best of wishes for a full recovery for Tommy!

Jody

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)

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

I am so sorry. Hope he is better now, please let us know how he is doing. We will be praying for him.

Tunde

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

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=thumbsup.gif]

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

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)

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.

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

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

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

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=heart.gif] Jill

Carol -

This is wonderful news about Tommy.  You are on my heart and in our prayers here in Texas.

Hugs,

Cass [smiley=cowboy.gif]

Fantastic. I got goose-flesh!

Tommy is one tough customer!

Stay Strong
Mark (Luca's Dad)

Way to go Tommy!!!!! Childern are amazing!!!
Becky

Carol~

Wonderful news!
I'm happy for Tommy and for all of you.

Sending my love and support.

Linda (LA)

Carol, this is the best new I could read today in this site. I'm so happy ....

Paula

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  :)

Thanks for the update Carol  :)
This is wonderful news about Tommy thanks for sharing it with us.
He will be in my prayers

This is so wonderful.  We'll keep praying for continued recovery for Tommy.  :)

Wow, he is a wonder! I'm so happy to hear that Tommy is making such great progress. I'm sure he's working really hard and it can't be easy for him. What a brave and strong young man. You must be very proud of him.
Kim

Hello everyone!  Tom is home, went through two weeks of at home therapy and then started outpatient therapy the end of August.  He is a wonder!  He is doing absolutely fantastic.  Last Tuesday he had his bone flap replaced in Wilkes-Barre, PA by Dr. John Cantondo.  When Dr. Cantondo received Tom’s bone flap from Strong Memorial in Rochester, NY it was contaminated so a fabricated piece was made.  Tom looks great!  Dr. Cantondo did a wonderful job on Tom’s head, he still won’t let us take any pictures but he really looks great.  There was very little swelling and his incision looks nice and neat. 

Tom is moving his left leg, standing for 10 minutes on both legs holding the bar his Dad put up under his bedroom window, he’s walking next to the island in the kitchen holding on with his right hand with us following him with his wheel chair.  Tom is also moving his left arm!  Not as easy as his left leg but it’s coming.  He can slide his left arm across the kitchen table and he registers about 12 pounds on the meter.  He’s had to have his memory refreshed now and then like on how to read an analog clock and to put spaces in between his words when he texts his friends and family.  His spirits are great; he’s happy, funny, determined and positive.  All in all we couldn’t be happier with his progress!  The only roadblock we seem to be coming across is the 60 physical therapy visits he’s entitled to per year.  We’ve used almost half and with the economy the way it is right now most likely won’t be granted any additional to take him through the end of 2009.  Your prayers would be greatly appreciated . . Thanks again and again – Carol, Tom’s Mom :D

Hurrah for Tommy! This is super-wonderful news.
Kim

This is fantastic, well done Tommy and Carol.

Stay strong
Mark (Luca's Dad)

Great news!! both of you are very brave, congratulations!!