Ok. If you are saying who the hell is Robert go to Daily JibberJabber and open Another new member how sad but good too. To read our story on how we got here.

   Heres what I am gonna do provided I dont get yelled at by you guys, that I am in the wrong place again(lol jk).

    Every step of Roberts treatment I will document right here under this thread.  If I am confused about some thing or need advice or just a shoulder to lean on, I will find another spot to post it. But this is where his treatment will be documented. As of today we have a appointment at Devos Childrens hospital in Grand Rapids on Thrusday  8/3/2006, All his records are in transisnt to there. I doubt we will have them do the surgery as the surgeon there has done only 1 but we do need to find out how occluded they say he is and what recommendation they make.  At the time of the appointment we will be picking up CD roms of all MRI CT's Xrays etc. and I will start sending them out to other Dr. as well.  Here again this all depends on how occluded Robert is and what I find out from Michigans Childrens Special Health Care system about paying out of state Treatment. I will next post here on friday when we know more

Mike

Aug. 3, 2006
         We have made it back from Grand Rapids, Found out very little from the surgeon, As Julie said, he is one of those doctors that hate the internet....I left there feeling like I knew more then he did. He just finished his fellowship in Utah.  He beat around the bush when I asked him his experience with Moyamoya.finally admited that he had observed 3 while in his fellowship.  He also said that the direct by-pass dont work and that he would do the indirect by-pass. We asked if he could tell how occulded Robert was and he said you can't really tell on the MRI but that the indirect by pass would only work if robert was 100% occluded. We did get the rest of Robert test sscheduled for Aug 16th,  This will be a angiogram, and a CT of the spine to look for Kippel-feil syndrome (congenital fusion of the spinal vertabrae) a condition I have that may be associated with moyamoya. SO I have some questions, but they will be posted under a different thread look for question on roberts treatment.

Mike

P.S. I would again like to thank every one who worked on this site and continues to join in the conversations ......with out it I would be walking in to the Dr's cold and having to take there word on everything.


P.S.S. AM I the only one that feels that once robert is fully occulded he will have already had a full blown stroke................I am not waiting for that to happen

Islandentity wrote on Aug 3^rd, 2006 at 11:10pm:

NO Mike, you’re not the only one, I couldn’t agree with you more! Waiting is dangerous and risky in many cases. I don’t know Robert’s specifics, but I do know that you are always at risk of a stroke with MMD, let alone waiting till it’s 100% occluded. We see inexperienced doctors say things like that all the time and it’s so disturbing to me. The philosophy of waiting till it’s 100% occluded, so the indirect surgery will take, is absolutely bizarre (IMO) and exactly why we encourage a MM specialist, one who has the experience and knows the different ways to approach MM treatment that’s best suited for that individual case. As far as his statement that the direct surgery doesn’t work, that’s absolutely incorrect! Direct surgery is frequently recommended and extremely successful and most favored in many cases. One of the reasons they do a lot of indirect surgery on children is because their donor arteries for the direct bypass are so small, but in many cases, the direct is till favored to get immediate blood flow, rather than wait over time to get additional blood flow, as with the indirect. Every case is different and the MM expert knows which is best.

As Diane said, Robert may have collaterals (MM vessels) helping supply the blood flow, which is great, but remember they are abnormal vessels, weak and fragile. They may rupture and cause a bleed/stroke at any time with this disease, and again, why I agree with you and believe it’s dangerous to wait and why I always emphasize seeking a doctor with MM experience.

Mar

Thanks every one for your input and warm wishes........

Mike

Jenny, Thank-you every one here has my prayers and best wishes as well...........I am extremely grateful for this web site and all the people on it........Even our primary care dr has been coming here to gather info.

the 7 surgeons we am going to contact are from the list posted here...............Its kind of a bit morbid of a recommendation, but at least you know they have had some expereince with mm


Thanks
Mike

So ..... how was the angio?

A confirmed dx? How occluded is Robert?

Hopefully, it was not too much trauma on your son.

best wishes,
diane

Glad Robert got thru it with flying colors! Sorry for the dx....but I guess that wasn't a surprise at this point in time.

I was told I am 85% or more occluded bilaterally and my left side is worse.

Don't be surprised if you hear conflicting and opposing opinions on how to manage your son's mm. I consulted with three top centers.....Cleveland Clinic, University Hosp (Case Western) and of course Stanford.

The University surgeon first suggested a wait and see treatment....just monitoring my mm......then when he saw I was not comfortable with that, suggested an indirect bypass surgery because as he put it "didn't see a good vein for a direct."

Cleveland Clinic and Stanford surgeons both said I have great veins and suggested a combo of direct and indirect bypass.  I was happy to see two big centers
agree. Although the neurologist consult at C.C. was suggesting only an indirect bypass....but the neurosurgeon was agreeing with Stanford's management.

In the end.....I have chosen Stanford and Dr Steinburg for my surgery and I am traveling this Tuesday! My 1st is scheduled for 8/25 then the 2nd on 8/29.

wish me well!

I'll try to keep the board updated.....and followup on Robert!

smiles...diane : )

I stand corrected, I mis read the letter and Dr. Macdonald did not intern under Dr. Steinberg just a mistake in my reading I have been in such a whir-wind of all this information I think a few of my wires are getting crossed........Did not want to mislead any one though.

Mike

Wow Diane you sound like my mom reincarnated. We have comfirmation that the dr. have received Roberts films but that is all . Sorry I havent been posting but have been busy with life and a group of people planning a fundraiser.
I am glad to here all went well with your surgery. feel free to email me at pettmj@hotmail.com

Ok we have heard back from Dr. Meyer @ the mayto clinic he agrees with the DX and Bilateral (he stated major concern) He would like us to go out there for up to 4 days for a battery of tests and consults we are awaiting to hear when.   

I sent out packages to Drs Steinberg,Scott,Macdonald,Meyer,Lewis,Clatterback

and to date I have heard back from only Meyer,(I hAVE HEARD FROM THEM ALL TO SAY THEY HAVE RECEIVED THEM) will wait to monday then start calling

WILL KEEP EVERYONE POSTED AS TO OUR PROGRESS

Mike

That's great..... : )

If you do choose to go with Stanford, I am sure of one thing..... It will probably be the most pleasant experience of all the hospitals. There is a deep personal touch between the staff and patients. That was very apparent from the start .... it is not a clinical, sterile operation and you are out the door....they are there =ith you all the way.

Now, before I left, Trina emailed me info about free / donated flights (I had already purchased tho)

but I am firewalled from my email account here in the hotel lobby, so I will have to forward you that info later or maybe she will pop in this thread....or you can PM her (tiomasai) is her MM name.

There are many donated flights to the airlines and also compassion programs through various airlines. Usually, it extends to the patient and one travel companion.

I even found a past post by Elaine....it seems So West donated her tickets....so this is a real possibility for you and Robert

here is the post:

"Posted by Elaine on August 02, 2003 at 09:53:00:

I am leaving Sunday Aug. 3 for California for surgery on the 6th. I have been off work for over a year because of MayoMayo so I am oh so broke.
When I found out 2 weeks ago I was going my friends & family pulled together to do a small fund raiser. I got in contact with South West & they Donated 2 Plane tickets to me.If anybody needs to contact them for help Call SouthWest at 214-792-6178 ask for Jim. He is great; they had an answer within 24 hours of us requesting it."

Next.....the hotels:

There are many here in Palo Alto on the main strip of El Camino Real and restaurants are accessable nearly every block. Most will negotiate a long term rate with you if you speak with the manager.

I am very pleased with my hotel as it has transportation included up to 5 miles.
Stanford is - 3 miles from the hotel, (10 minutes only), in room Wifi, safe, 2 full beds, pull out sofa, cont breakfast etc..... a garden in front of my room and a private garden/patio in back....very relaxing.

Jeff Wark the sales manager gave me a $105 daily rate (the rooms go for $189) You might even be able to work out a better deal.....just explain your situation.

The Stanford apartments are only $75 per night, but it is a tri-age system and you will have to get on the list. It is a studio apartment with two twin beds.. and it is strickly for a patient and one companion. If your wife will travel with you....then that won't work for you. Jill can help you contact the right department to research that option.

and now for the most important situation here,
I have just completed double
bypass surgery and it went as smooth as a brain surgery could..... so...am I happy with my surgical choice.....you bet!

Ok... now let's get Robert fixed!

smiles...Diane

We have Robert registered at Stanford, should know dates of Surgery relatively soon, We are progressing on insurance coverage, Things are looking very positive.

I posted a new topic of disussion on what to expect after surgery as far as Roberts personality and intellect are concerned.

Robert continues to do well, No new signs or symptoms to speak of....although it is a bit scary that this progresses so slowly that we may not see any new symptoms til a major stroke.

Appearentlyt I have rattled enough cages on a state level to get Robert's out of State coverage approved, We are now waiting for Stanford & Dr. Steinberg to become a Michigan Medicad providor and accept the scale of pay, hopfully that happens relativly quickly (no pressure Jill)    I feel we got over the biggest hurdle today.........

God Bless
Mike