Hi,

My husband was diagnosed in Nov. with MM after having a stroke that left his left side paralyzed for three days (came back after they profused his brain).  He had a right side STA-MCA AND EDAS and came through very well.  Obviously, that was a 100% blockage.  He had been having TIAs for 7 or 8 months, but never had any headaches.  He was diagnosed in June as having MS, because he had numbness and spasticity in his right had (started about a year ago).  Well, as it turns out, this was a stoke that caused his hand to be like this.  It was confirmed in Dec. that he does not have MS.

While my husband waits to get a release to go back to work (which the neurosurgeon, physiatrist, and PCP don't want to give) I am worried because his left side is 80% blocked and the surgeon just wants to wait and even goes so far as to say he may never "need" the left side done.

My questions are these:
Did you have a stroke with the bypass right away after or were you diagnosed and then operated on?

What percent of blockage did you have when you were operated on?

Thanks for reading this!  I look forward to your answers!

Shari

I wish I could remember what percentage my blockage was, but I can't. What I can tell you is this: by the time I was correctly diagnosed (I was also misdiagnosed with ms) the doctor told me that I had to have the surgery immediately or risk a debilitating stroke.

There are no words to express just how important it is that you and your husband get a second opinion. Moyamoya ALWAYS gets treated with surgery if it is treated correctly. I highly suggest that you get in touch with Dr. Steinberg over at Stanford for a second opinion. 80% is a pretty serious amount of blockage. In a simplistic analogy, imagine trying to use your sink with the pipe 80% occluded. I don't imagine it would be very effective or that it would supply you with enough water to the jobs it needs to. I believe that it works the same way with the brain.

I'll be praying for you as you and your husband make some very important decisions in the days to come and I really really hope you take my suggestion. It's one I think that most if not all of the "moyamoyaers" on this site would give you.

Jesenia

Hi Shari, Welcome to our MM family!

I agree with Jesenia 100%!! Waiting with a 80% blockage is very risky, IMO. This is a progressive disease. It only gets worse over time, so I don’t get the “wait and see” approach. With MM you can stroke at any given time, at any stage, so waiting is dangerous and risky, unless there’s a specific medical reason that surgery has to be delayed. I, like you would be very concerned!! With MMD, if you are diagnosed and get surgery before a stroke, you are considered very fortunate. In most cases you’re not even diagnosed until after a stroke. That’s the purpose of the surgery, to avoid a stroke; so waiting makes absolutely no sense to me, especially with an 80% blockage.

The “wait and see” approach is the particular pitfall we see because so many in the medical field just do NOT have enough experience with this rare disease. Delay in treatment can mean life or death.

In our case, my 20 year old niece was also told she had MS for years, then one day she had a stroke and they sent her from our local hospital here, to the University hospital in the city, where she was diagnosed with MMD, and they told us that we had some of the best neurosurgeons in the country there, and that they knew about MMD, BUT their opinion was to wait and see, so naturally we believed them. Long story short, it wasn't long and bam, she ended up having 4 devastating strokes that left her in a coma, on a feeding tube, paralyzed, and fighting for her life. Had we known that surgery was the ONLY option for treatment with MMD to avoid those strokes, her quality of life may not have been changed forever as it is now.

So my advice would definitely be the same as Jesenia, to get a second opinion. Now a day, you simply mail a copy of your recent films to a MM specialist, one who deals with this disease on a daily basis, and they will contact you with their expert opinion. I've seen it save lives.

You and your hubby will be in my thoughts and prayers.

Mar

my daughter was diagnosed in sept 2008 with left side 100% blocked and right side 70-80% blocked. We left for Stanford for surgery on her left side Nov. 5, 2008 and she suffered 2 strokes on the right side during surgery that surgery. MMD can progress very fast and you can never know when that next stroke can occur. It was unpredictable that her right would 100% occlude at that time but we sure are glad that she was in a wonderful place for that to happen. God Bless Dr Steinberg and his team!

Where did he have his surgery?  And who was his Doctor.  A second opinion should always be ok with a good doctor.  Have you thought about seeking a second opinion?  My blockage was totally complete...it actually looked as though I didn't have any MCA's at all.
But my nuerologist at home said we will just wait and see.  I sent my records to Dr Steinberg at Stanford and he said I needed immediate surgery. He got me in very promptly for a STA-MCA bypass, on both sides.  I would trust Dr. Steinberg with my life.......and I have.  Contact him.

NEVER WAIT!!!!!!!!!!!!!!!! You need an MM specialest!!!!  Call Dr.Stineberg's team. He can give you advice on what steps need to be done. I would find a nurologest in you home town that knows more anout MM then the person you are seeing now.
I will pary for you and your husband. I hope you find the safest choice.
Becky

His doctor is Dr. Bendok out of Northwestern University Hospital.  I am trying to get my husband to get a second opinion, and I will go the UIC next.  Both are teaching schools and have the best medical staff in the Chicago area.  Traveling out to Stanford is not an option at this time.

What does it mean to profuse the brain?

Michele

Hi Shari,  Welcome to the mm famliy.  I had a stroke in 2002. I was sent to a neurologist who did an MRI and found I had two brain aneurysms. That is when I was sent to the University of Iowa Hospitals to have a brain angiogram. That is when I was told I had mm. I could not have bypass surgery at that time because they had to take care of the aneurysms first. I had my aneurysms coiled and had my bypass surgery one year later. My prayers are with you and your husband. You have to live one day at a time and be thankfull.

Sharon

Shari,

Through the years I have kept myself updated with the neurosurgeons in the Chicago area that I would trust to handle MoyaMoya.  I highly do not recommend UIC at this time (see other posts elsewhere on this board).  I would say try U of C although, if I were in your shoes, I would send my films to Dr. Steinberg-it's free, get his written recommendation of how to proceed from here, and show this to your husband's present neurosurgeon (or a new neurosurgeon in the area) and go from there.  A good doctor will graciously take advice from another doctor that has more experience in cases like this.  Mine did.  I can understand that going to Stanford may not be an option, so this may be the next best thing.  Whatever you end up doing, arm yourself with information and facts about this disease so you can tell if a surgeon has enough experience with MM and you can feel comfortable with their advice/course of action.  

Please feel free to e-mail me anytime.
Lisa

Michelle,

Perfusion of the brain is basically trying to flood the brain.  First, my husband was invert (feet above head), flat except to eat once he finally could.  Then they raised his blood pressure to about 180/100 and gave him heparin and another drug (can't remember the name, but it was to enhance how much fluid the bloodstream had).  They did this from a Tuesday night until Jim had the surgery the FOLLOWING Thursday.  It was done to get him recovered sufficiently after the stroke before surgery.  It worked.  He was completely left side paralyzed for the first two days.  Then he could move his legs on day two.  Day four (20 or so hours after the perfusion started) he could finally move his arm.   Slowly over the next 8 days, he regained memory, some manual dexterity, and ability to speak more clearly.  (Couldn't hardly understand him for the first three or four days.)  He also couldn't swallow.  About the time he could move his legs, he was finally able to eat.

Hope this makes it clear!


Shari

Shari,

For what it’s worth, I learnt first hand, generally speaking, that teaching hospitals and the medical staff mean absolutely nothing when it comes to MMD. It’s experience and knowledge about “ the disease itself” that’s the most important factor. As I mentioned before, we were told we had one of the best medical staffs in the country here at the University of Pennsylvania. In fact, we had the head of neurology/neurosurgeons expert opinion, but sadly, they just didn’t have enough MM experience, and their one bad call cost my niece her future and any chance for a normal life. I agree they had an excellent medical staff and many brilliant neuro’s there, but they did NOT know enough about this rare disease. That's the difference in many hospitals throughout the country.

So no matter where you go, please remember that MM experience is so important. It saves lives. Like when Lisa posted her opinion about UIC, that was strictly her opinion, I grant you, but she too knows from experience the nightmares she experienced there from the lack of MM experience and only wants the best care possible for you or any new member.

I understand that Stanford isn’t an option for everyone. I wish it were. I think many here are simply saying that since Stanford is one of the largest MM referral centers in the world and Dr. Steinberg is a MM specialist with almost 600 successful surgeries to his credit, that if you requested a second opinion from him, you would then know if your concerns are valid and if you are on the best path for your particular case. We constantly see the battle with members trying to find a doctor with enough MM experience for successful treatment. That’s all we can hope for. I can’t wait until I see some guidelines/protocols set for MMD, so that experience and knowledge will be there for everyone that needs treatment, but until then, we’re simply trying to guide people in the best direction based on our experiences.

You and your husband remain in my thoughts and prayers.

Mar

Shari -


wrote on Feb 12^th, 2009 at 10:34pm:

Shari, For what it’s worth, I learnt first hand, generally speaking, that teaching hospitals and the medical staff mean absolutely nothing when it comes to MMD. It’s experience and knowledge about “ the disease itself” that’s the most important factor.

Amen to what Mar said.  I was also diagnosed at the Hospital of the University of Pennsylvania although my nero told me to go out of state to get my surgery done.  Consequently, my second opinion was also at another teaching hospital and the nero was so excited to see my case he called a meeting with another neuro in his office to show him my films...I would have been his first MM patient and he would have treated me with meds, not surgery (luckily I found this site before that...).

Anyway, I second what Mar said...

-Shari (yes, another one!)

You have to find someone with MM experence!!! I was missdagnosed for 6 months. I was seeing a nuologest who said i could not have MM since I was not asian! I was lucky and got a scecond opinion form some one who said it was MM. I got help from this sight and got a better nurologest. Don't be afraide to sent you info to Dr. Stineberg, he should be able to help you find someone in your area or give you info to the nulogest who you are seeing.
Becky

I did get my husband to agree to a second opinion.  Don't get me wrong...I am confident in the diagnosis (which was made at our local hospital through his neurologist) and even pleased with the surgery he had done.  The doctor did exactly what this site (and others) said he should do pertaining to the surgery.  But that was only for his right side.  It is his left I want to know about.

Yesterday,I spoke with Andrew Kloak, Dr. Steinberg's associate.  He transfered me to someone else who took down very basic medical background, and that person said that someone would call back today with what we should do from here.  I haven't heard anything yet, but I'll keep you all posted!

Thanks for all the support and advice!  I have been lurking here since November 25, the day it was confirmed it was MM.  Glad I am no longer lurking!

Shari

Hi Shari!!  I'm so glad you're getting that second opinion.  My daughter has MM and the neurosurgeon here in Michigan, who has MM experience, wanted to wait to do the surgeries.  I had already been on this site though and the one thing we didn't want to do is wait.  Emily had both of her surgeries performed by Dr. Steinberg and we are so very happy with the results and she is doing so well.  :)  I hope everything works out great for you too!!!

-Audrey