Hi guys...looks like this will be "my" new clubhouse! I am a 45yr young female with 5 lovely kids. (3 college aged boys and twins…a  boy and a girl aged 10 ½
I have had neuro sx's for over 5 yrs and they kept saying No MS....you have fibromyalgia! The doc's didn't think to go outside the box even with 6 continuously progressive abnormal Mri's and lotsa paratheses and bouts muscle weakness during those years.

Well…moving right along…..
This May I had a bad flu which caused an acute Pericarditis, dx’d on June 1st. I spent a week in the hosp while they drained 1/2 liter of fluid from my heart and injected steroids back in. Pericarditis is considered very rare. I was “special”. Was sent home expected to have a full recovery.....err read on, My pericardium membrane scarred and thickened, causing me to have congestive heart failure and needing an emergency Pericardectomy on July 3rd, complete with open heart surgery and a broken sternum to heal (not to mention a lovely ten inch pirate scar! ARRRRR)
Well, during either the heart catheterization or the heart surgery (does it really matter?), I had a couple of little strokes which led them to do an MRA and a Ct scan……yep now things are looking interesting and we did the brain angio which gave me my MoyaMoya dx! I was released with the dx but was in Akron City Hospital and this was Way out of their league. Now, I headed up to Cleveland for the big guru’s.

This week I was admitted to the hosp for 6 days while they did a nuclear spect scan and another Ct and a range of poking and prodding about. I am bi-laterally 75 -80% occluded in each cerebral artery!

I went to the Case Western University Hospital with the team there and will have second opinions from the team at Cleveland Clinic. They are all going to decide if surgery is of benefit and how to proceed. At this point they are talking revascularization surgery as opposed to stents or shunts. That was the plan if it were vasculitis….but alas….I am VERY special and have Moyamoya!

So how has YOUR summer been? Mine has been quite a ride!

Drop in and let me know some of my soon to be Moyamoya friends and if you had surgery.

Big smiles to you all…..Diane from Akron 

Welcome to MM.com Diane.

There is a lot of information here and people to help you find it.
Just above your post you will see Dx Process in the Moyamoya related Information and Support.

If you  go to Links page(upper right corner)you will find MM Specialist.

Again Welcome Aboard
Kevin

Hi Diane,

Welcome to the family! (Club) lol

It appears you are taking all that has happenend to you in stride and have been able to find the humor in it all.

You have come to the right place to find a wealth of information about moyamoya and the various surgical procedures. This is a terrific group of people who have all been down the same road and who are willing to share their personal experience and moyamoya journey with you.

I am Cubbie's sister. We too live in Ohio about 25 miles north of Columbus.

What a summer you have had! WOW!! You have really been through a lot in a very short period of time. I hope things get better for you real soon.

Cubbie is 48 yrs old and went misdiagnosed and undiagnosed for 4 years after a significant stroke and a smaller stroke. As much as I dislike having to acknowledge that the docs here are clueless when it comes to moyamoya and the various surgical options, it's pretty much a fact. As a result, Cubbie was treated ( 2 STA-MCA bypass surgeries) May 2004 at Stanford University Medical Center by Dr. Gary Steinberg. All the docs here sent Kevin home to "live out whatever life he had left." Those were their exact words. Imagine that! Or they would say the same thing you mentioned which was "This is way out of my league".

You can read on the message board about the different types of surgeries depending on your specific case as it is different for everyone depending on each individual circumstance. IMO it is very important to have a moyamoya specialist...one who is familiar with and has experience with treating moyamoya. There are many very excellent neurosurgeons throughout the USA however, many are unfamiliar with moyamoya and as a result, don't know what to look for or know the best way to treat moyamoya. It's not just the different surgeries that are important it is also the types of testing and anesthesia and the hospital that are also very important.  Although there are neuros that have seen moyamoya there are really only two neurosurgeons in the country who have successfully treated moyamoya for almost two decades and have devoted much of their practice to moyamoya. They are Dr. Scott in Boston who treats primarily children and younger adults and Dr. Steinberg at Stanford who treats infants to older adults and everything in between.

Like I mentioned earlier, there is a wealth of information here and folks to share their moyamoya experiences with you and will answer any questions you may have. So ask away!

Please take care of yourself and let us know how you are doing and how things are progressing in your treatment of moyamoya.

Hugs,

Lore   





 

Hello Lotsofkids,

I know what you mean about the "muscle weakness etc." I had the same symptoms for 7-8 years and thought I will get well one day......YES I DID ONLY, by having the surgery with Dr. Steinberg about one year ago. That's when I met Kevin and Lore and many of my
MM friends. We shared our fears & worries but best of all we shared our success stories and everyone here also share the HOPE that we will be able to SPREAD THE WORD about MM and "you are not alone."
Don't worry you are at the right place and you are in our prayers. Good Luck and keep us posted.

LOL,
itsme

Hi Diane,

Thought I would let you know some of the symptoms Cubbie (Kevin) experienced and how he is faring in the aftermath of it all.

As you may recall from my earlier post, Cubbie went misdiagnosed and undiagnosed for 4 years after a significant stroke that early on caused temporary paralysis in his arm and affected his speech. The paralysis in the arm went away however, the speech and thinking ability did not go away. Kevin was admitted to a hospital in Florida where he lived at the time and they discovered something was wrong with the right carotid artery but really didn't know what it was. They diagnosed it as FMD. That lead us to the University of Michigan where Kevin was treated by Dr. Thompson and Dr. Stanley. Dr. Stanley is a FMD expert. They diagnosed Kevin with a dissected right upper internal carotid artery. As time passed it was clear something was desperately wrong other than just the remnants of a stroke. An angio was performed and that is when the moyamoya vessels showed up. The docs had no idea what it was and said they had never seen anything like it. To make a long story short, Kevin's films were sent to Dr. Steinberg at Stanford and he confirmed a diagnosis of moyamoya. By the time Kevin got to Stanford, his left artery was 90 percent blocked. He experienced dizziness, a swooshing sound in his ear, and he was way off balance. His skin was gray. Dr. Steinberg performed the two bypasses one week apart. Kevin in the meantime, suffered a hemmorrage from the brain that affected his ability to speak or have abstract thinking. When we returned to Ohio, Kevin went into a rigourous speech therapy program. Today, you would be amazed at Kevin's progress. He has regained his ability to speak (occassionally has difficulty with words) his abstract thinking ability has returned. He has gotten on with life and lives it to the fullest. THERE IS LIFE AFTER MOYAMOYA. We can't thank Dr. Steinberg, nurse Teresa and the entire moyamoya Stanford team for what they have done and continue to do for Kevin.

We have a saying in our house "you can get busy living or you can get busy dying, it's your choice".

To be fair to all who have different moyamoya experiences, some had surgery before a dibilitating stroke. Others had mild strokes and some have just simply overcome their strokes. The flip side to that is there are some who are far less fortunate and everyday is a struggle and my heart aches for them and their families. Some went misdiagnosed or undiagnosed like Cubbie and the results can and in some cases are extremely devastating. That is why it is so very important to spread the word about moyamoya. To educate the medical profession about the disease and treatment options and not waiting to see what might happen.  Early detection is the key.

There are many incredible folks on the board who have a moyamoya story and although there is a common thread, no two stories are exactly alike. Many have continued working fulltime and simply moved on. Others may have problems such as a co-morbid condition that may prohibit them from certain activities or even working outside the home. It depends on so many factors. The point I'm trying to make is if you are treated early, before other things occur such as a dibilitating stroke, it goes without saying that the chances of regaining full recovery are far greater.

I hope this helps you to realize that there truly is life after moyamoya and certainly attitude plays a big part in the scheme of things. Keep a positive attitude and outlook and you will do well.

What amazes me and is my inspiration is many of the moyamoya children have had devastating strokes and they keep on keepin' on. They have been through so much yet they manage to overcome so much. It is simply incredible to me. Everyday can be a struggle for them yet they continue to be troopers. I have learned a lot about life and persistence from the children's stories. It humbles me.

Keep your chin up and keep us posted on your treatment progress. I know you will do fine. Gosh, with lots of kids what choice do you have? LOL!

Hugs,

Lore
     

Dear Diane, 
 
Welcome to our family!  I am sorry about your diagnosis, but you've definitely come to the right place!  You'll learn about MM, and there are some wonderful people here, all who have traveled this road in one way or another.   
   
I am the mom of a 19 year old girl who was diagnosed and had two bypass surgeries in May/June 2004.  We consider ourselves very fortunate that our daughter had had "only" two small strokes prior to surgical treatment.  Two years later, she is doing wonderfully - you'd never know she'd had surgeries.   
   
I'm sure you're seeing that the best thing you can do to advocate for yourself is to read up and become educated about this disease.  As you become more familiar, you will understand that this is not a "wait and see" disease.  It is progressive, and ideally surgical treatment is obtained PRIOR to the damage that may be caused by a devastating stroke or hemorrhage.      
   
As others on this board have already mentioned, unfortunately, the majority of the medical profession is just not well educated about MM.  This is difficult to comprehend, as in this day and age we all feel that we'll be able to get whatever medical treatment we need close to home.  Such is not the case with MM.  You're right to seek additional opinions, but I also urge you to seek the advice of, as well as treatment by an expert.  The experts have anesthesia and nursing teams who see MM on a daily basis.  This is very important as the neurosurgeon is just part of the overall care.  You asked how many surgeries Dr. Steinberg has done.  The answer is over 350, and he's had excellent long term results.  People come to him from all over the country (and world).   
   
To be completely forthright, I will say that I now work for Dr. Steinberg at Stanford.  After going through my daughter's surgeries, recovery, and then (on a volunteer basis) becoming very involved in supporting MM patients traveling here from out of town, my job with them just kind of evolved.  Suffice it to say that I was so impressed with the program, becoming part of it seemed exactly what I was meant to do.  From a personal, and certainly a "mom" perspective, Dr. Steinberg is definitely my hero!   
   
Good luck to you as you continue the education process.  You will be added to my prayers.  Please don't hesitate to continue asking questions, and I hope you can decide on a plan of action that seems to best suit you! 
 
Warmly, 
Jill   

I HAVE SELF MERGED THIS THREAD FROM JIBBER JABBER (tired of being a split personality)


Kath41
Junior Poster

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Hi Diane  
Well it sounds like you had  quite a time reaching this point but I am glad you still have a GREAT sense of humor!!  Sometimes with life all you really can do is just laugh because if you dont you may cry...I am like you..the glass is half full!!!!!  This is a great web site and a wonderful support system so I am glad you found us...can I give a piece of advice?? I would suggest that your doctors there contact Dr. Steinberg (there is a link in this web site to him) and consult with him about your situation because he is a MoyaMoya expert!!  You will find that he has performed many of us here's surgery..there is also a list of qualified surgeons that may be closer to home for you but any way around it I think it would be in your best interest to have a doctor that is familiar with MM take a look at you MRI's and MRA's before you make any decisions!!
Welcome aboard and keep us informed on how you are doing!
Warm Hugs,
Kathleen  

MERGED POSTING FROM JIBBER JABBER

elaine
Special Access
Junior Poster
 
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Hey Diane, I just asumed you were having your surgery at the Cleveland Clinic I know they have done several of my MM friends there BUT if I need surgery again Dr. Steinberg is THE BEST one for MM he has done ALOT of MMer's,,,,,,Welcome to "OUR" Family   Elaine 
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Elaine 


lotsofkids
New Poster
 
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Hello again Elaine!

and thanks for your PM (I'll be getting back to you on that)

We are seeking the expertise of both the University Hosp and the Cleveland Clinic. 

Mostly, the University will do the surgery as my hubby will start working there as of Sept and we thought the insurance issues would be less complicated pre and post surgery. The Neurosurgeon at the University is a doctor Warren Selman. He is the director of Neursurgery at the University and also a director on the American board. We will also see Dr. Jose Suarez there. He is a neuro guru with vascular experience.

Then we plan on a second opinion from Dr Anthony Furlan at the Cleveland Clinic.

Would you happen to know who was the surgeon at CC that did your friends? And how was their outcome?

I am leaning towards sending my films to Stanford as well! 

Does anyone know how many surgeries Dr Steinburg has performed on Moyamoya patients? I would be keen to see some stats. The BIG doc at Children's of Boston (Dr Scott) lists 208 surgeries from 1985 - 2005 .......so that's barely 10 per year from kids flying in from all over the country! We really are a small group!!!!

This is all so overwhelming! My house is becoming so disorganized as I have spent my summer in the hospitals. I haven't even finished our taxes! I filed an extention till Aug 15th and that's just around the corner. I guess we'll extend to Oct 15th! (that's the max)

Well, that's it for now.....big smiles.....diane : )

~Put the chocolate in the bag.....and nobody gets hurt~ 

Dear Mar and Janko,

Thanks so much for coming in to share with me your stories. I can't hear enough about everyone and how they did pre & post surgery. It is all very encouraging. You are giving me hope over here!

You are also hightening my interest to get my surgery done at Stanford with Dr Steinburg! I will rally an opinion from him soon. First, I will go to my intial consult set up for this Friday and see what is said and take the ball from there.

This morning after all the "merging" of the two posts, I started to feel kinda crummy. I am only 3 weeks post open heart surgery and I thought "that"  was a lot to get used to! But, hey.....I have to have 2 rare dx's in the same month......I'm just incredibly special!!!

My hubby is a back seat doctor in all of this and I sometimes wonder how strong "his" opinion will be in deciding my course. It can be a good thing or a frustrating situation with a caring spouse directly involved! During the heart saga.....no one could take a step without him agreeing to the management. (but cardiology is his field) This moyamoya is way out of our league.....so I WILL seek all the expert advise that I can....and I hope that the decisions will ultimately be mine to make.

thanks again.....I never expected such amazing responces from the board. I am welcoming every single post with open arms. I feel supported and encouraged because of this site.

big hugs and smiles.....diane : )

Hello again STRANTAS (Shari)

That's comforting to hear! Thanks for sharing such info. I am hungry for such titbits of knowledge!

Friday I went up for my Neuro consult from a really big guru at the University Hospital. My hubby was keen to see if he agreed with the mm dx. Well, yes he absolutely confirmed the mm and he said I was even more occluded than the other docs said. He said both arteries were 80-85% blocked and maybe more.....he will go into the films and try and get accurate measurements. They will conference my case on Tuesday and let us know the gameplan thereafter.


Meanwhile, my films have arrived today at Stanford/Dr Steinburg and Joli called back right away!!!! and said he recommends the STA_MCA surgery on both sides for me. This means I will be having a lot of decisions to make in the next few days.....well, it's nice to have choices! I can't believe they mobilize so fast....just amazing!

The University has had 11 mm patients in the past 8 years.....of which only 8 went to surgery....so approx 1 per year...I am leaning toward Stanford....but the logistics is daunting. I have 5 kids and complicated schedules. My husband is in the middle of changing jobs (actually he is joining the "University Hospital" Sept 1st) so he has all of August available.......see.... somehow things do have a way of falling into place. He would never have the time to shuffle otherwise! But he cannot be in two places at once....watching me and watching the kids?????

We'll figure it all out I guess. We might have to travel to Calif with the twins! The older boys are registered in college summer courses. They will have to fend for themselves....but....hey if you have a telephone.....pizza is just a call away! LOL

Big hugs to you.....Diane : )