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

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

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  ,

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!!!   (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,
Jan