Click this link to read a post I like on the moyamoya.com message board...

eirelynsmom

New Poster

Offline

I Love MM.com!

Posts: 22
New Port Richey, Fl
Gender: female

Here at Stanford! :)
Jan 23^rd, 2012 at 11:33pm

Doctors at our local Tampa General Hospital told us that Matt was in need of the EC-IC bypass again. Before agreeing to do this again in Tampa (failed bypass before, infection, craniectomy as a result, etc..) I decided to contact Dr. Steinberg and send stuff off to Stanford. Quickly they responded and within a week I was on the phone with Bob and setting up Matt's surgery schedule. Matt arrived here in Palo Alto this past week and began a week of testing. I arrived in San Francisco on Saturday and he and I spent the next two days seeing the town. Then today, he had some more tests and we met with Dr. Steinberg this afternoon to go over the tests and to make a plan. Matt will be having an indirect bypass on Wednesday, the 25th. The doctor feels that this is better for Matt than to try a direct bypass again on the left side. When he reviewed the MRI scans with us, it was amazing how there is practically no blood flow to the left side of Matt's brain. The disease is present on the right side, but there is still blood flow so surgery is not needed at this moment on that side. Dr. Steinberg will do the indirect bypass and put in the bone flap that was removed back in November. I will update more as things progress. So far, I am pretty impressed. The HOME apartments are nice and we have met 4 other men here with Moyamoya awaiting surgery. Been nice to meet the other families. Grin

Back to top

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

DJ YaBB Administrator Offline Been there, done that... Posts: 721 Wichita, KS Gender:	Re: Here at Stanford! :) Reply #1 - Jan 24^th, 2012 at 7:31am So glad you were able to make it to Stanford! We will be thinking of you and your family in the coming weeks. Please keep us informed on the progress. Hang in there! DJ
Back to top	Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle! IP Logged

eirelynsmom New Poster Offline I Love MM.com! Posts: 22 New Port Richey, Fl Gender:	Re: Here at Stanford! :) Reply #2 - Jan 24^th, 2012 at 12:16pm Thanks So far I'm impressed. Will definitely update. Shari
Back to top	IP Logged

hrsridermom Senior Poster Offline mother of 19 yr old daughter with MMD Posts: 292 Tampa, USA, FL, Florida Gender:	Re: Here at Stanford! :) Reply #3 - Jan 24^th, 2012 at 4:44pm Shari, the indirrect is what Destin had. It worked really well for her on the right side. I'm glad you got to Standford. You'll have to tell me about TGH. Destin likes Dr. VanLovern and Dr. Roase. She has plenty of time before she needs surgery on the left but she's not sure where she would have it done.
Back to top	Destin's mom IP Logged

Chers

New Poster

Offline

I Love MM.com!

Posts: 5

Re: Here at Stanford! :)
Reply #4 - Jan 26^th, 2012 at 4:52pm

We are also currently here at Stanford. Our son who is 3 had his right side done last week and his left side this morning. I can't commend everyone from Dr Steinbergs team highly enough. We came especially from Ireland and the care here is outstanding and they have great compassion for their patients. We consider ourselves extremely fortunate to have gotten the opportunity to get him treated by Dr Steinberg.
Hope you are doing ok and Matt is recovering well.

Back to top

IP Logged

eirelynsmom

New Poster

Offline

I Love MM.com!

Posts: 22
New Port Richey, Fl
Gender: female

Re: Here at Stanford! :)
Reply #5 - Jan 26^th, 2012 at 7:47pm

Maybe we can connect while we are both here at Stanford?

So, Matt's surgery went well and let's just say they have been on top of his pain and his care from the minute he left the OR. I am so so so pleased with that. Because he had an infection less than 6 months ago, he was put into a private ICU room...and I love love love how he has a one-on-one nurse 24/7. Both nurses he has had so far have been amazing!
Matt has had a few complications or weird situations post-op...but he is a difficult case with his blood disorders. He had an emergency CT scan last night and then one today and is going for an MRI soon as well. His mouth drooped on the right side last night and he lost the use of his right hand...the droop is still there but the function of his hand has returned, although weak. This morning the ICU called me and told me to come over because while Matt was talking with his nurse he suddenly lost the ability to speak and his face began twitching. They are thinking it was possibly a seizure. So after ruling things out with CT scan and MRI, then the next step is continuous EEG. His spirits are up and great. I think that he has totally appreciated being listened too and having them stay on top of his pain, which is something that at TGH I had to constantly stay by his side and fight for. I think every hospital should have a family care coordinator that is a NURSE like Stanford does. Talking with Kerry while Matt was in surgery and getting the ICU team prepared for Matt made all the difference in the world. I have been impressed with Steinberg. Although I love Dr. V from Tampa, and would trust him for follow up ... I just don't think you can beat or get around the fact that this Dr. is the expert in this field...his medical journals are the ones that these other surgeons read. They refer to his work with moyamoya. We are blessed and lucky that Dr.Steinberg is here in our country..maybe not in my state of Florida, but it hasn't been too hard to travel to a different state. The HOME apartments that they put us in are lovely and have been a blessing. I would recommend that anyone who has this diagnosis travel here. I know right now there are four other families in this apartment who are here with their loved one with moyamoya for surgery. Also nice to be with others who are here facing the same disease and the same surgery.
I will update more about Matt as his care continues.

Back to top

IP Logged

DJ

YaBB Administrator

Offline

Been there, done that...

Posts: 721
Wichita, KS
Gender: male

Re: Here at Stanford! :)
Reply #6 - Jan 27^th, 2012 at 7:34am

Chers and Shari,

Thank you for the updates on your visits.

Chers, it's nice to hear you were able to travel from Ireland to have your little one treated. I hope he recovers quickly!

Shari, sorry to hear Matt is struggling a bit but glad to hear his spirits are good. I'm sure he will pull through and be back to full speed in no time! Hang in there!

Smiley

DJ

Back to top

Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

IP Logged

eirelynsmom

New Poster

Offline

I Love MM.com!

Posts: 22
New Port Richey, Fl
Gender: female

Re: Here at Stanford! :)
Reply #7 - Jan 29^th, 2012 at 2:03am

Thanks! Matt is doing much better. CT scan and MRI showed no brain bleed and Dr. Steinberg isn't worried about the "episodes"...said they are normal and will pass. Matt was discharged this morning and we are back at the HOME apartments. It was good to see the others here at the apartments who had the surgery and are up and about.

Shari

Back to top

IP Logged

Chers New Poster Offline I Love MM.com! Posts: 5	Re: Here at Stanford! :) Reply #8 - Jan 29^th, 2012 at 1:59pm THats great Shari. Delighted Matt is doing so well and has been discharged. When will you be able to head home ?
Back to top	IP Logged

Click Here to visit the Moyamoya.com Facebook page!

eirelynsmom

New Poster

Offline

I Love MM.com!

Posts: 22
New Port Richey, Fl
Gender: female

Re: Here at Stanford! :)
Reply #9 - Jan 29^th, 2012 at 3:42pm

I moved my flight from today to Wednesday. Just wasn't feeling okay about leaving him with the "episodes". So, this wednesday I go home (I have to get back to work, I'm a teacher and this has all been time off with no pay) but Matt is here until his staples are taken out and Dr. Steinberg told him he wanted him here an additional 10 days from this past Saturday. I guess because of the episodes and Matt's previous infection and then the drainage he had, they want him here for a little while. How is your little one doing? I told Matt you gave me your number and first thing he asked me this morning was "when do we get to meet them?". So if you are still here let's get together.

Back to top

IP Logged

Chers New Poster Offline I Love MM.com! Posts: 5	Re: Here at Stanford! :) Reply #10 - Jan 29^th, 2012 at 4:46pm That's good. We hope to be discharged tomorrow and should know better in morning and would love to meet up.
Back to top	IP Logged

eirelynsmom New Poster Offline I Love MM.com! Posts: 22 New Port Richey, Fl Gender:	Re: Here at Stanford! :) Reply #11 - Jan 31^st, 2012 at 10:08am I fly home tomorrow...so if you are still around, I will call your phone today and maybe we can meet for just a bit. Hope the discharge took place Shari
Back to top	IP Logged

SD New Poster Offline I love YaBB 1G - SP1! Posts: 13 Stuttgart, Germany Gender:	Re: Here at Stanford! :) Reply #12 - Feb 8^th, 2012 at 12:19pm Our son had bilateral bypass in OCT/NOV. Post surgery slurring occurred a few times but we were told that was normal. It ended after about a week.
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	NEW search box below... Search Moyamoya.com with Google!