John -

Thanks for your post, but I have to tell you that I am a supporter of the surgery and I think you will find most people on this site feel the same way.  I find it hard to believe there is a treatment there that stops the narrowing of the blood vessels.  If there is such a thing, I would like to think more doctors would support it.  What's the catch?  Can you please explain to me this therapy?  I'm finding it very hard to believe....

-Shari

Hi John,

I read your post and I’m pleased to hear you’re doing well and only wish the very best for you, BUT, I must say, I feel it was totally inappropriate of you to make such dangerous and false statements without citing even one single appropriate reference or using any facts to support your claim that  “there is an alternative to by-pass surgery” When in fact, to date, surgery is the mainstay of treatment for MMD and no medications prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing. Source: Dr. R Michael Scott, Director of Clinical Pediatric Neurosurgery Children's Hospital, a leading MM specialist.

the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Death usually results from intracerebral hemorrhage. Source: NINDS-National Institute of Neurological Disorders and stroke

I only cited two excellent references, but there are plenty more to support the facts that surgery is the ONLY proven treatment for MMD to date.

Although, I must admit... I wish and constantly pray for the day your claims would possibly be true, but the facts are John, you could be harming so many people that are looking for help with this rare disease, by making false and outrageous statements like... "It can be cured all together." when we all know for a fact, that is absolutely NOT TRUE to date, and you do not have one appropriate references to such a claim or any facts or studies to back it up.

I wish you well John, but my opinion is, you're NOT helping anyone without any facts or proof to back up such claims against some of the best MM specialists' in the world and their life long studies and reseach. This rare disease has enough problems with getting the proper information out to people, without putting false information out there.

So again I say... Cite the appropriate references.

Mar

I searched keylation on yahoo and found it to be a over the counter herbal treatment for the removal of plaque and heavy metals in your arteries no tests to get approval................I dont think that enlarges the arties that are narrowing in Moyamoya patients. John has no business making a unsubstaniated sales pitch here on this site and Some one needs to talk to DJ and have this whole topic pulled

Mike

Wow, quite a bit of good information, Mar.  Thanks for the time you spent on the research.  From what I saw, it looks like chelation therapy is intended to remove heavy metals and placque.   

I have a question for you, John.  You had 51 treatments, and as a result probably have no placque or heavy metals in your system.  How do your carotid arteries look as far as size?  Have they continued narrowing?  Do you still have moyamoya vessels present?  The problem with moyamoya vessels is that they are prone to hemorrhage because they are fragile and simply not equipped to handle the needed blood delivery over a long period of time.  I hope that you continue to have regular check-ups, as it would be a shame to have additional strokes or a hemorrhage. 

Like Mar, I too pray for the day when another method of treatment is proven to be successful.  It doesn't appear that this particular method is it, though.

Jill

Hello,
I was skeptical too so I understand. Like I mentioned on my posting......I am a rare case and I dont intend to make any claims or promise any cures......So, with that said I will explain what prompted me after all these years to post.......
As I said, I am a Massage Therapist in Pa. The other day I worked on a client who had moyamoya disease. She had the by-pass surgery on the same day that my Daughter was born!!
Now, I thought that it was strange to meet someone who had the same problems that I had and was diagnosed with moyamoya disease!! After talking with this woman and finding out that her surgery occured in the same hospital that I was in when I was sick and also the fact that It occured on the same date that my little girl was born compelled me to post this after so many years. It was a bad memory but I felt I had to let people know that there MAY be an alternative to by-pass surgery.
We are living in a society where sickness and disease are big business. Most Doctors have to see so many patients a day to pay their malpractice insurance. So the patient suffers with 15 minute visit. What can a doctor determine in 15 minutes.?
Doctors are only trained in two areas.....drugs and surgery!!
No nutrition, no exercise, nothing.
Healthcare is a joke.......its become sickcare.......
I could go on but I wont.......
Money is the reason doctors proscribe surgery........In most cases.......Its all they know they are not trained in how to maintain health.
Having said that I went to a Doctor Stuart H. Freedenfeld
at Stockton Family Practice in NJ.
He performed my chelations and Im certain that if you contacted his office and reqested info on chelation therapy they would send it and recommend someone in your area that does it. 609-397-8585
Call andget the info.its loaded with references and helpful resources........it wont hurt......
Again---I make no claims.....Just sharing my story...take from it what you will....
Thank you,
In Health,
John

I am the first person who will go to bat for natural therapies in normal circumstances, but I must say that Moya Moya disease is NOT your normal circumstance. I would not feel happy about treating my MM with pills and while I generally do not advocate doctors and unnecessary surgery, I do believe that they are the only solution  for curing MM. I have no regrets whatsoever about going through with both my surgeries and I would go so far as to say that even if it was proved tomorrow that there were ways to fix MM without surgery, I would have still gone through with my surgeries, as that is the only way that I positively know that I am able to live my life normally today.

A  P.S. on the Chelation therapy: My oldest son is autistic and we have him on Chelation therapy to flush out heavy metals (mercury, copper etc) of his system, but that is for something totally different and a NOT LIFE THREATENING disease.

I think that there is a place for natural therapies, and I have personally tried Reiki etc but I don't believe it should even be considered when looking at treating MM.
I, like all of the others, would express caution if looking at this alternative, because I think that nothing would be more tragic than a person choosing this method of dealing with their MM only to suffer an unnecessary stroke that could have been avoided with surgery.
Moira

Forgive me for being facetious here but I am a bit puzzled how someone who has actually gone through chelation 51 times can mis spell it (keylation?!!!)

John,

Please understand, I don't think anyone wants to be nasty. It’s just that we’re like family here and we’re all very protective of each other like most families are. Together, we’ve gone through the worst this disease has to offer. So we're careful. We have to insist on reputable and accurate facts or people could die. So we question when we have to, to protect our family and their future.

Speaking of questions, I’d like to ask you a few myself, if you don’t mind; I’m a little confused here. I see you posted again and said… “I dont intend to make any claims or promise any cures.” And again you repeat that at the end of your last post, you say… “Again---I make no claims.....Just sharing my story”  BUT, didn’t you state in your story, and I quote: “Best of all......It fixes the problem for good!! It is not just treating the symptoms. I can make no claims for anyone else.” So then, are you speaking strictly for yourself?? In sharing your story, are you saying that YOU are now cured, that it fixed your problem for good????? Are you cured or not John????? See, I’m confused, because IF the story you shared with us is true and your MM is fixed for good, then you ARE in fact making HUGE CLAIM, one for the record books! Yet, you keep saying… "I make no claims." I don’t get it (??) You would think something as big as “fixing your MM for good” has to be documented and easily proven; yet you posted again and still not even one single reference to prove such a big claim of a “cure” for MMD.

You also said, “I just want people to be aware that there are effective alternatives out there” (Effective being the key word) That is not simply sharing your story, it's another HUGE claim without any facts or references. Unless you have proof that it IS EFFECTIVE, arn't you making another claim???  Why do you refuse to back up your words?? I don't get your purpose??

In your second post, you didn’t even attempt to answer any of Jill’s valid questions, like… You instead, danced around ALL of our questions and implied that doctors only do surgery for the money. Surely you have to see why our MM family has lost trust in your words and have so many questions???!!

In all honesty John, IF I saw your post when I was new here, not knowing about MM yet, my family may have delayed taking action with her treatment, thinking there was a possible cure or an effective alternative out there somewhere, and frankly, she could have died because of your unsubstantiated claims, or simply from the delay. Although that was a theoretical situation, the influence of your "claims" on new members is still there.

All that we ask is that you please choose your statements carefully and present references/sources to back up your cliams. That is vital on a medical website.

Mar

Hi all,

I've been quiet lately (due to some personal issues) but felt the need to respond to this post.  Firstly, I don't think we should delete this post as I think it's quite the testament to know what NOT to do.  Knowledge should be based on facts, though it often is not (can we say WMD -  , ok I digress).  That being said, all knowledge should be presented so it can be addressed. 

I am a firm believer of herbal remedies, but having moya moya, I would never recommend herbal remedies, as John has, as a replacement of surgery.  Let's remember, there is no cure so surgery isn't a CURE but it IS the most viable treatment out there, based on the minimal research that is currently available. 

I would like to thank John for putting the topic out there.  It reminds all of us, especially newly diagnosed patients, that we should all do our homework before addressing our health, research all options, know what to do and not to do.  I think the responses are clear in recommending what one should do. 

Hugs to all,
Trina

John promotes naturopathy and all other replies promote allopathy.  Naturopathic cures are almost never supported by clinical trials, because these trials (phases 1, 2 and 3) require tens of millions of dollars for completion.  These cures are simply not sufficiently profitable to afford these costly trials. Furthermore, allopathy and Big Pharma suppress these cures with propaganda lest folks become cured and they lose business.  To cut out part of the brain without eliminating the underlying cause is ignorant and dangerous.