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

Island.....

I am closely following Roberts journey....and my prayers are with him.

We will all get through this......and a year from now, hopefully posting the glowing results of a long, bumpy road that had a rainbow ending!

Glad you are sending his films around to as many skilled experts as possible......let "em all see your son's films!

Warm wishes to all the family.....and big hugs to Robert from his new clubmembers!

Keep us posted....
smiles....diane : )

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

Hmmm.....waiting till Robert is fully occluded....sounds like bad medicine to me....but hey, I'm not a doc.

Keep seeking those opinions elsewhere....and of course once you have your angiogram done....then that will be a powerful diagnostic for the doctors. That "is" the official confirmation of MM and will also give an idea of how occluded your son is currently.

It is my understanding that the developed collaterals.....are doing all the work to bring the blood flow up to the brain.....hopefully, Robert has many collaterals in place, but I wouldn't wait for progression of occlusion % to mobilize towards surgery. Intervention should be as soon as you are comfortable with the dx and the treatment suggested along with the team of doctors that are willing to do the surgery.

Warm wishes....diane : )

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

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

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

I agree with what Diane said!  

The thing to keep in mind is that moyamoya is progressive.  It doesn't get better or reverse itself.  The only tried and true treament to reduce the chance of having strokes is surgery.  

I would run screaming from that last doctor!  Sounds like he isn't even considering your thoughts or any possiblity that these surgeries work!  Direct bypass absolutely works - Indirect bypass absolutely works!  The difference is the immediacy of the restoration of blood flow.  Direct provides immediate restoration while indirect (what I had) takes time to see the results.  

Good luck!

-Shari

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

Mike

Hi, Mike.  I replied to another of your posts before seeing this one.    I am sooo glad you are researching on the Internet :)

There are many, many doctors who don't like it, but I think that is because once you get information on your own, you are likely to know more about the disease than they do (at least when it comes to something like moyamoya, which is not widely understood).

My daughter had two strokes before she was finally diagnosed with moyamoya.  And, once diagnosed, her doctors said that - because of the damage from the strokes - there was no hope for her.   Thankfully, we found an experienced moyamoya surgeon (Dr. Steinberg at Stanford), and it has been more than a year since Daphne's surgeries.    She had indirect bypass surgery, due to her age at the time (less than 18 months), and today her cerebral blood flow is 200% better than it was before the surgeries.  She has had no other strokes, or stroke-like episodes.

Sometimes parents have to put up a fight to get to the right doctor.  We were very fortunate that our insurance (Blue Cross/ Blue Shield) did not give us any trouble, but there are members of this board who have had experience fighting their insurance when necessary.   There is a section on this board where people have written about surgeons they recommend.

I wish you luck, and will keep your son in my prayers.

Jenny

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

8-14-2006
         We head out tomorrow for Roberts angiogram and CT in Grand Rapids. Itinerary is
645am robert has to be at hospital, 715 ct 900am angiogram 300 pm we meet w/ surgeon to go over findings(that would be the one we are not having do the surgery) 0845 thrusday meet with neuroligist....That would be the one we are keeping.
         I again would like to thank you all for your warm wishes and thoughts on my various questions,

          I have made comments with several of the surgeons offices on our list of 8 now (ty lisah for your excellent recommendation of Dr. mcdonald) after talking with various surgeons and/or nurses in their offices we have decided to wait until we have the angiogram as well as the other records to send them out .......as they said it will make it easier for them to look at the entire picture at once rather then having to keep reveiwing a file.


will continue to post as we muddle our way through this

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

8-17-06 We have maded it back from Roberts angio and CT.......The angio went well Dr Martin and his Dream Team (ped sedation) were excellent with Robert. he then had the ct to look for klippel-fiel. We confirmed MM bilateral. according to the nuerologist it is equal on both sides being 90-95 percent occluded. The surgeon(we dont like him and he is not touching our son) says its worse on the left then right and he would do a unilateral surgery indirect bypass on the left only and watch the right. the neuro (who is in my opinion simple awsome) says he would be looking for a surgeon who would do a bi-lateral combination direct and indirect.
we will be mailing out all his films to our list of Dr.s asap
and will beanixously awaiting their consenus....the neour is helping this process along by giving all surgeon access to the films on his database. We are very lucky to have found so a good nuerologist, I would recommend him to any one

on a side note..........The neurologist feels robert has been nearly occluded since birth as he has such a extensive set of collateral vessels. His blood supply for the diesease is very good and there is no signs of any permanent damage to his brain....

Thanks again for all you help and prayers

Mike

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 : )

Diane,
    Of course well wishes, and your in my prayers (as is everyone with mm Nowadays) (funny how that works isnt it)clevand clinic is on our listv as is stanford and boston........as robert is still a ped we haVE to find a surgeon who wont take a wait and see approach....while waiting for a stroke............we cant nor will we wait for that to happen.......if I was leaning one way or another I am thinking it would be Dr. Macdonald out of university of Chicago. from what I understand he interned under Dr.Steinberg consults every surgery with him and is practicaly right next store (about 8 hours from us) we have to see what every one says though

Take care, Good Luck, and of course God Speed

Mike

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

OK....I am a little concerned over here as you have been quiet here on the board. I hope all is well and you are just busy being involved in the process of all of this MM stuff.

Do pop in and let us know that Robert is doing well and that you might even have a medical plan in place now to get him treated surgically.

I have just completed my both surgeries with Dr Steinburg and was greatly surprised at how fast my recoup is. I feel like I was only hit by a mere motorcycle....instead of being hit by a truck or train.

And if Robert would only be doing the in-direct surgery...then he will have even less trauma and a speedier recovery.

Just find the doctor that you are comfortable with and entrust your son and get him fixed!!!!!

It seems as if now, (w/a big smile) I will be joining the ranks with all those reformed MM surgery patients....extoling the virtues of a revascularization surgery. I have BLOOD FLOW!!!!!! What a great feeling!

Keeping you in our thoughts and hoping all is fine on your end.......

diane : )

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

So Glad you popped in and updated us. I really was unsettled with the silence.

Are you waiting on Stanford or another Institution? Jill told me that they do have your films here. Maybe you should give them a holler and see what's up. In all cases, it will be a solid report/consult from the utmost authority Dr Steinburg.

I was speaking with a Japanese Neuro Fellow and he said that the program at Stanford has actually surpassed the Japanese centers. This is the strongest Moyamoya program currently in place....anywhere!

During my searches for expert opinions.....my husband often joked...."we can always go to Japan for a consult", but it looks like now some of Japan might be coming here!

I will email you a little down the line as I do have internet access in my hotel room....but I am getting on through a tiny WIFI PDA and well.....it's a bit time consuming to enter a lot of text! (currently, I am in the lobby of the hotel....but it has one lonely computer and it seems to be always in use by a guest....I woke early for my coffee and was lucky to find it empty)

Waiting to hear all positive, forward news from your side....

diane : )

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

Just got off the phone with tresea from Dr. Steinbergs, office.......WOW, finaly someone who is thinking like us. No need for 2 trips to california, rather just one long trip(3 weeks). at which time they will do a MRI and spect scan prior to Bi-lateral combination surgery(5 days apart) looks like the end of october for a date....we are leaning that way as of right now. need to check on a few things. like airfare and insurance and lodging etc. oh and lets remember the fact that we will be gone from our 13 year old and 3 dogs and a cat for that long.LOL aint life grand

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

Everyone thanks for your imput, we are working on logistics....................HELL EVEN LOOKS LIKE MICHIGAN CHILDRENS SPECIAL HEALTH CARE SYSTEM WILL BE PICKING UP HOSPITAL CHARGES.

Thanks
Mike

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.

Today is Wenseday the 27th, We are still working towards Stanford, All Other Dr.s have replied, and although Dr. Scott is seems a excellent choice he dont do the Direct that our Neuroloigist wants robert to have, also Dr. Steinberg is still the only one that contacted our Neurologist and talked about things, and Dr. Steinberg is the only one that would schedule our inital trip and surgeries at the same time to save travel, Mayo Clinic, John Hopkins, and Boston all wanted a 4 day visit to make a recommendation for surgery after running all the tests again. I didnt see much sense in that.-So anyway thats where we stand. will keep everyone posted

Mike

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

BIG CONGRATS! Wonderful news!

May it all keep running smoothly

smiles....Diane

Thanks Diane,
Not only for the response....got your package today .....the biys loved them were on their way out to carve on the post(old tree stump) when they decided to way til later and do it by flashlight......had to chuckle at that............
Thanks a million..........hope all is well with you

and every one else here
Mike

my pleasure....  glad they liked them.


smiles...diane : )

so Here I sit awaiting word from Stanford that all is ready and we have dates......I will call them again on tuesday, I am trying to be patient but I was never very good at that.

Meanwhile, we held Roberts fundraiser yesterday.....wow you have to check the post under daily Jibber Jabber.


Everything is fine with Robert he continues to maintain the status que, he did have a mild spell lastr night at fundraiser but I half expected it with all the commotion.


Mike

AT last I have confirmation from a reliable sorce(gotchorline) that the contract between Stanford and State of Michigan is on Dr. Steinberg Desk, I am now confident in saying "when do we go to stanford" as opposed to "if we go to stanford"..............Dates will be posted soon.

Mike

Yeah!!! Great News

Janice

Mike:

Hi, I'm Julie's mom. Julie is 15 and will be at Stanford on Nov. 16 to start tests and Nov 22 for her surgery.  We are so excited!!  [smiley=sayyes.gif]We hope to see you there.  Have you heard anything about surgery dates?  It looks like we will be there thru Dec 2.

Keep us posted.

Cheri
aka Julies Mom

aaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhh............got our dates today.....they would like us there um thrusday  the 21 of October (yes thats next thrusday) 1st suurgery on the 24th second on the 31st................ well I guess I have plenty to do between now and then.
To all my MM Family in California......whats the weather like near stanford this time of year (please dont answer with warm, cool, ETC.) as that is all relative to climate I need to now what type of clothes to bring.................
Mike  

No turning back now, we have a place to stay, a rental car, flight infomation, and a address to send cards It has been a extremely long weekend working on logistics. We will be leaving our house on Wenseday, flying out of Grand Rapids on Thrusday at 6:30 am arriving in San Fran 1130 am (CA Time)   Robert Starts tests for pre-op on Friday running through Monday these test include a 2 phase spect scan, a MRI, and doppler imaging of the brain region. We also meet with Dr. Steinberg and his team on Monday with Roberts first surgery being scheduled for Tuesday