Stroke Notes: North American moya moya is different

Stroke Notes: North American moya moya is different

Non Surgery Support!!

If you have chosen to NOT have surgery, would LOVE to get a comment from you here, so we can start compiling a group of folks that are walking the same path.

I saw a few posts that encouraged me to start this, so welcome!

Blood flow is KEY...

I am spending my time with Em instead of hanging out here or on the MM board, but I do check in every once in a while.

The trend continues that when asked if surgery is always required, that the answer is 100% yes on the forum.  The same folks continue to always jump in and repeat the standard "progressive" disease remarks and that if your doctor recommends anything but surgery they must NOT be an expert.

READ my other posts here, there is statistical PROOF that the surgery is for ONE purpose only and that is to improve BLOOD FLOW.

In NONE of the posts do they EVER ask the question about whether or not the doctor has done a blood flow assessment??  THAT is the primary tool for deciding whether or not surgery is required at this point!!  

Who has the NIH asked to study this disease?

http://neuro.wustl.edu/patientcare/clinicalservices/moyamoyacenter.htm

Now I hate to be a skeptic, but let me ask you this question.  If you ask a surgeon whether or not you need to pay him TENS (Hundreds?) of thousands of dollars for surgery... what do you want to bet is his response?

This is true for nearly EVERY branch of medicine, ask a surgeon if surgery is needed and there is a GOOD chance the answer is yes.  (Ask a therapist if therapy will fix you, and chances are THEY will say yes too...so I am saying there is a natural bias.)

SO...what is UNbiased?  Science, math.... 

Ask for the MATH... what is my brain blood flow and oxygen levels in the side of the brain with Moyamoya?

What is the "normal?"

What is the "normal" for folks AFTER that surgery???

Surgery is supposed to increase that, it does NOT stop the disease, and if you read the MM forums enough you will read several stories about major strokes, minor, TIAs after surgery!!  

That's right, it is STILL all about BLOOD FLOW!!!!  You will also read cases of folks diagnosed 30 years ago, NO surgery, that are doing fine!!!!!

BUT EVERY case is unique.  Surgery is not the 100% answer...   GET the numbers, ask the questions, educate yourself and THEN make a decision based on all the data.

FINAL thought... DO I think surgery is the right answer?  I suspect that for MOST folks, that it improves BLOOD FLOW, therefore it IS THE RIGHT DECISION!!

But I come to that opinion AFTER doing the research, hearing the math and making an informed decision, not just listening to the "standard" answer.

(To answer another question, NO, Em has not had surgery, taking blood thinners as primary treatment method for now.)

MoyaMoya and Retinopathy

We have been battling Diabetic Retinopathy for a couple years now, with the latest surgery a couple weeks ago.

According to the Doctor, since the eye is not receiving the "standard" amount of blood flow, it believes that more veins are needed.  

Those start growing in the eye, they will bleed at times, causing black spots in your vision, etc, which is how we first found out she had this issue.

This is likely to be caused even MORE by the fact that Moyamoya reduces the amount of bloodflow to the brain.  Diabetes is the primary reason for the retinopathy, but I wanted to put up a post here that if you have Moyamoya AND diabetes, you really need need to have your eyes checked out by an Opthomologist.  

The normal eye doctor that checks your vision does NOT have the tools that can truly diagnose the Retinopathy.  So just consider yourself forewarned!

In our case, we started with the Laser surgeries about a year before knowing Em had the Moyamoya, and another round of them again this year.  Then in September, she had a vitrectomy and is recovering from that now.