I have reposted my intro over here.....this looks like the lively side of town! I posted up on the moya related side and all was quiet there.
anyhow......here goes.....


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

Hi Diane [smiley=wave.gif]
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

Thanks and hello Kathleen!

I think when all the consults locally are done....I will overnight my disks to the Stanford guru....it just makes sense to see what his thoughts are on my mmd.

I look forward to getting to know all my new friends here on the board.....WE are special!

warm wishes....diane

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 :D  Elaine

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~

Hi Diane,  [smiley=wave.gif] Welcome to our MM family!

It’s great that you’re seeking a second or even third opinion. We can’t emphasize that enough here in our support group. It’s vital IMO, that you seek a doctor that has MM experience, so you’re more confident you’re on the correct path to mange your particular case of MM. I know from experience that it’s not enough to have a great neuro, but rather one that knows this rare disease and how to manage it best suited for YOU. There are brilliant neurosurgeons out there, but unfortunately many without enough experience with this rare disease to know, for example, which type of surgery is best suited for your specific case. No two cases of MM are alike with all the different and individual factors involved, and there are many different ways to manage it. It’s not enough that they know how to do the surgery, but rather know MM the disease itself for the best long-term success.

We were told that the neurosurgeon here was one of the best in the country, and also head director at the University of PA., but as far as experience with MM the disease, not much and he advised the family to wait and do surgery for my niece. She had 4 devastating strokes at 20 years old. She was medically airlifted to Stanford, where Dr. Steinberg saved her life. So I can’t say enough about the life saving advice and support DJ gave us, as to seeking a second opinion with a MM specialist.

As far as how many surgeries Dr. Steinberg has done, I personally couldn’t say the exact amount, but I do know it’s hundreds and that he deals with MM on a daily basis, and has done the many various versions of surgeries for MMD. He lectures, does research, testing, studies and teaching on MMD. That’s why we can say he is a MM expert. The man is a genius. I can’t say enough about his devotion and expertise in dealing with MMD. He has a complete staff that has extensive MM experience, which we found to be very important in follow up care, as well.

Keep us posted. You’ll be in my thoughts and prayers…

Mar

Hi Diane  [smiley=wave.gif],

I'm so happy you found us.  I was 43 years old when I was diagnosed last year after suffering a minor stroke.  I had my surgeries done in April of this year and I feel great.  It was a big debate between me and my boyfriend on whether or not to have the surgery.  After my follow-up by my neurosurgeon and being told that it doesn't look like you'll have any more strokes, then started having some tingling on my right-side, I decided to get a 2nd opinion from Dr. Steinberg.  And, I'm I glad I did.  I think I'm number 257 (or some number around that) for surgeries with Dr. Steinberg.  He's been doing this surgery for over 15 years.  I think he's great!!! [smiley=thumbsup.gif]  (At least that's my opinion.)

You will find that this is a great support network.  I met a few patients of Dr. Steinberg's while I was at Stanford.  These people are so nice and make you feel like family (especially being so far away from home)....special thanks to Jill, Campbell & Tara, Theresa, Joli, Trina,Sara & Keith, Michelle and all the others my mom & I met.  Hope you will find all the support you need here!!

Much Aloha, [smiley=hug.gif]
Jan

Dear Mar and Janco (and anyone interested in following this thread)

I am self-closing this thread and moving it all over to my first thread on "Moyamoya Related Information and Support" . The Thread is of the same name over there. I posted my intro in two areas and now the both threads have a life of their own....my brain is challenged enough and this is like having a split personality!

I have cut and pasted the above dialogs in their entirety over to the original thread and will answer your posts there.

Thanks for being patient with a newbie!

SEE YA OVER AT Moyamoya Related Information and Support / newly dx'd w/ moyamoya