pediatri.turkiyeklinikleri.com/download_pdf.php?id=42012 -

pg 3 discusses MM...
I'm sure you have already poured over the info available on the internet, much as we all did when first DX
God Bless you and watch over your family
Michele

As an added note Kimberly, I just wanted to say, there is nothing wrong with questioning your doctors’. It’s very smart!! This is a rare disease and you are simply questioning the facts of your research and want the best for your sister. If you ask the majority of MM patients on here who have been successfully treated for MM, you’ll find that every single one of them questioned their doctors at some point and had to fight to get the proper help they needed, in one way or another. The fact that you’re doing research and questioning just may save Juls life. So I say, atta girl! Keep up the good work. We’re here to support you both on your travels and will help in any way we can.

My continued thoughts and prayers...

Hi,
The hospital cannot legally deny your sister copies of ALL of her medical records and scans. Because the hospital needs to protect the confidentiality of the patient, they require that the patient sign a request form. You should call and ask
them to fax it to you. Also ask for their fax number so that you can return the completed form to them via fax - it's
faster than the mail. Ask too what authorization your sister must give for you to be able to pickup the records. Tell them of the urgency of the request and of your past unsuccessful requests.

They should be able to copy the medical records and make CDs of radiological scans and have them available for you to pick up that same day or the next. You typically have to request the paper records from the Medical Records Department and the CDs of scans from the Radiological Records Department.

Don't accept any excuses for their not being able to get the records to you quickly. Ask to speak to supervisiors of the departments if you must and if necessary the Patient Advocates Office within the hospital. Be polite, but be firm! It's your sister's life that you're fighting for.

You can then FEDEX overnight the records and CDs to the doctor in California. If you have time, make copies for yourself as well. It's not a bad idea to have them on hand so that you don't have to go through this hassle a second time. Buy one of those small plastic boxes for hanging files and keep her record all in one place. This kind of organization save lots of time in an emergency. It was that kind of organization that I  had trouble with before my surgeries. I'm sure your sister would appreciate your help with that.

If you're unable to pick up her records yourself and have to rely on their being mailed out by the hospital, be sure to ask what day they will be sent then verify that they were received. If not, all the hospital again right away.
In the future be sure to request copies of all tests and records before leaving the hospital. You make the request at the Medical Records and Radiological Records departments, fill out their forms right there. Keep a copy of the request forms for yourself in case you have to follow up.

Hope this helps. I've been through this myself. Your sister is fortunate to have your help. Good Luck!
Kim

I wanted to thank everyone that has replied to all of my questions and given so much support and best wishes.  Tonight is a little rough but wanted to let everyone know how my sister (Juls) is doing.  Ktiller thank you for advice about her films/cd.  The doctor in CA has received them and we have our second opinion.  She has full blockage on one side.  And please forgive me because she was a little upset when we talked on the phone and I couldn't make out if it was 25% blocked or 25% open on the other side.  I can thank you all enough for all the advice, support and understanding.  She now has a correct diagnoses and we can start to plan the next steps.  God Bless each and everyone of you.  Kimberly

Do you still remember us? We are from Poland. Our daughter -  2,5 years old Hania -is suffering from the moyamoya disease and in December our baby girl experienced two ischemic apoplectic strokes within a period of a month. Here in Poland nobady wanted to help us, but thanks to your help, sending us the e-mail adress  to many specialists in moyamoya disease and their intervention, in May our daughter was operated.
We would like to thank you from all our heart for your help with Hania’s case, for your support and your lovely letters.
We apologize that we did not notify you about the operation earlier, but we spent a very long time in the hospital with Hania. We are very grateful for your help. In Polish Child Health Center- seemingly called the best hospital in Poland – we had to cope with lack of understanding and little knowledge about moyamoya.
Doctors in Warsaw assured us that the operation is not necessary, that there is no chance for saving Hania’s life, and that they do not give permission for Hania’s treatment abroad.  Now we know that the best Child Health Center in Poland is just our dream.
But thanks to Dr. Scott’s intervention we find wonderfull doctor in Lublin. He helped us and operated on our Hannah. We could not believe that after so many months of fighting for our daughter’s life, the surgery would be finally performed in Lublin, Poland.
Owing to many kind people from our city Hania has a website www.lewko.eu where some information about moyamoya in Polish can be found.
As of today, one month after Hania’s surgery, our daughter feels much better. She does not eat through a tube any more. Unfortunately, Hania still suffers from very strong body spasticity. She does not speak or move, but we believe that hard work with a rehabilitant will bring some positive results.
We know the consequences of two strokes can be severe for her, but we hope that young children come back to their shape very fast. That is why, we-her parents- will do everything to help her become independent.
We were wondering if you could help us one more time and give us an email address of any rehabilitant that works with children with the condition similar to Hania’s.  We would need his/her professional advice and assessment of Hania’s rehabilitation that is taking place here in Poland. We just want to make sure that rehabilitation services including physical therapy are provided in the most efficient way. We want our daughter-more than anything else-to recover and enjoy life just like many other children.
Perhaps you could give us some advice  how we should rehabilitate Hania and what medicines our Hania should take? We would be very grateful for your help in this case.
Ewa, Peter, Hannah from Poland

Hi Vahit, Welcome to our MM family!

The newly occurred vascular which is feeding the brain that you speak of is in fact moyamoya disease. With MMD, the arteries at the base of the brain narrow and close off, so your brain does not get the proper blood, oxygen and nutrients it needs, so your brain tries to compensate and grows it’s own vessels to help supply the brain with the blood it needs, but those vessels that grew are ABNORMAL vessels that are weak and fragile, and those newly occurred vessels you speak of are not equipped to deliver the volume of blood needed over a long period of time. MM is a progressive disease that only gets worse over time. That’s why every MM patient is at risk for a stroke or hemorrhage with this disease, and surgery is the ONLY treatment to help avoid that stroke/hemorrhage.

With the symptoms you’ve described, it sounds as though your daughter is having TIA’s (mini strokes) they usually don’t last long, but are warnings of a possible stroke/hemorrhage to come. That’s why prompt treatment is so vital, before a stroke occurs. Unfortunately, the ONLY option with this rare disease is surgery. Surgery introduces new blood flow to the brain by either “direct” or “indirect” bypasses. It’s very important that you find a doctor with MM experience. This is a rare disease, and there isn’t enough MM experience out there in the medical community yet, so you have to be proactive in finding a doctor who knows this disease and has treated this disease. That’s the key to success for your daughter, IMO.

At any phase you’re at risk for a stroke/hemorrhage. Don’t get me wrong, every case is different, depending on many individual factors, but never the less, those tiny weak vessels are capable of rupturing at any phase for a number of reasons, so waiting is risky. You’re considered very lucky if you get treatment BEFORE a stroke. That’s the point of surgery, to help avoid a stroke. So tracking is like a “wait and see” when she will stroke. With MM, you know a stroke is coming, you just don’t know when.

You are the first member that I’m aware of from Turkey, so I’m sorry to say I have no idea of a doctor there in Turkey with MM experience. But even here in the USA, any member who was treated successfully had to find a doctor who has MM experience because it is considered a rare disease.

Please seek a doctor with MM experience ASAP!! I will keep you and your daughter in my thoughts and prayers.

Please keep us posted.

Mar

Hi Sandy,

Research (and clinical practice, with well over 800 moyamoya surgeries) at the Stanford Moyamoya Center suggests no. I've attached a link to an article from 2010 regarding this below.

http://neurosurgery.stanford.edu/moyamoya/Angioplasty%20and%20stenting%20.%20.%20.%20Moyamoya%20Angiopathy%202010.pdf

Jill