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Avoiding Surgery with Keylation Therapy (Read 15677 times)
johns
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Avoiding Surgery with Keylation Therapy
Sep 18th, 2006 at 12:39pm
 
Hi everyone!
My name is John Shaheen and I was diagnosed with moyamoya disease after I had 2 strokes back in 1993. I was in bad shape, the stokes left the right side of my body completely immobile and it left me unable to speak. It was horrible! I was 18 years old, in the best shape I  had just graduated high school 3rd in my class. I was attending Rutgers University in NJ on a full academic schoolarship!! And Then......Bang!!
I did not opt for the surgery........Instead I had 51 Keylation treatments over the following years after my strokes. I changed my diet slightly,quit smoking and continued exercising and after 2 months in rehab  I learned how to talk again and walk again. I have since graduated Rutgers with honors,  recieved my certification as a massage therapist, studied Reki and am living as a healthy and happy 31 year old. I even got married and had a new baby. I wanted to share my story so people would know that there is an alternative to by-pass surgery. Its called Keylation Therapy. Its very expensive and time consuming and most medical doctors do not "believe" in its effectiveness.Also, most insurance does not cover it. It is non-invasive and much cheaper than surgery. Best of all......It fixes the problem for good!! It is not just treating the symptoms. I can make no claims for anyone else.  I dont want to influence anyone  not to have surgery I just want people to be aware that there are effective alternatives out there that may be worth checking in to if you or someone you love is ever diagnosed with this awful disease!! I would be pleased to go into more detail if anyone is interested.
In Health,
John
I am a rare case. Be aware of all your options before you choose surgery.
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STrantas
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Re: Avoiding Surgery with Keylation Therapy
Reply #1 - Sep 18th, 2006 at 1:11pm
 
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
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gotchlorine
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Re: Avoiding Surgery with Keylation Therapy
Reply #2 - Sep 18th, 2006 at 1:39pm
 
John,

I am happy to hear you are doing well, and would be very interested in hearing more about keylation therapy.  Are there sites you can reference that provide information?  Like Shari, I too am curious about non-surgical treatment that stops the progressive narrowing of blood vessels.

Thanks for sharing your story.

Jill
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Re: Avoiding Surgery with Keylation Therapy
Reply #3 - Sep 18th, 2006 at 2:22pm
 
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.

Without surgery,
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
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Islandentity
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Re: Avoiding Surgery with Keylation Therapy
Reply #4 - Sep 18th, 2006 at 2:40pm
 
John, Like the rest here, I would be interested in finding out more. I am currently going through this with my ten year old son and although I cant bring myself to say I am a supportor doing surgery on anyone. I do beleive after several consults with numerous Doctors that surgery is the only effective treatment for this.

Mike
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Islandentity
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Re: Avoiding Surgery with Keylation Therapy
Reply #5 - Sep 18th, 2006 at 2:51pm
 
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
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Mar
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Re: Avoiding Surgery with Keylation Therapy
Reply #6 - Sep 18th, 2006 at 3:18pm
 
I briefly did some research on this and here is what I found so far... Chelation Therapy is pronounced "keylation” Therapy

Quackwatch-- Chelation Therapy Unprovin claims and unsound Theries:
http://www.quackwatch.org/01QuackeryRelatedTopics/chelation.html

Quackwatch-- Chelation Therapy and Insurance Fraud Stephen Barrett, M.D. Robert S. Baratz, M.D., D.D.S., Ph.D.
http://www.quackwatch.org/01QuackeryRelatedTopics/chelationfraud.html

American Heart Association:
http://www.americanheart.org/presenter.jhtml?identifier=4493

We found no scientific evidence to demonstrate any benefit from this form of therapy.

Questions and answers on Chelation Therapy: American Heart Association
http://www.americanheart.org/presenter.jhtml?identifier=3000843

After carefully reviewing all the available scientific literature on this subject, the American Heart Association has concluded that the benefits claimed for this form of therapy aren’t scientifically proven. That’s why we don’t recommend this type of treatment.

Here is a pro use for Chelation Therapy: http://www.drcranton.com/chelation/carter.htm


Mar

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gotchlorine
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Re: Avoiding Surgery with Keylation Therapy
Reply #7 - Sep 18th, 2006 at 3:46pm
 
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
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Re: Avoiding Surgery with Keylation Therapy
Reply #8 - Sep 18th, 2006 at 5:32pm
 
Hi, John.   I appreciate that you are not against surgery, and that you have had a good experience with chelation.  I have heard a lot about it.... actually, my stepfather wanted me to have it done with my daughter, at one point (we did not).

I am all for alternative and complimentary medicine.   I give my daughter all kinds of vitamins, a few herbs, and have taken her for craniosacral therapy, among other things.  I also am very focused on her nutrition, and now refuse to give her pre-mixed formulas, even though she is g-tube fed, and insist on pureeing table food for her, giving her things like flax meal, kale, beets etc.

I do think that alternative therapies can be beneficial in certain cases, and can even surpass Western medicine for treating certain disorders.

That said, I feel like many of  those who practice chelation seem to think that all the ills humans suffer is due to heavy metal toxification.   There may be some cases where this is true, but it certainly is not the common cause of all ailments, in my opinion.   It would be nice if those in Western medicine looked more seriously at alternative treatments, and it would be nice if those who practice alternative treatments were more open to western medical ideals.   For one, I have heard that there are alternatives to aspirin that may be easier on the stomach and just as effective at preventing clots.  It would be nice if Daphne's traditional doctors were more familiar with these types of things (ie fish oil, natto) and could tell me more about them and if they would be safe.  On the other hand, I have never questioned the need for my daughter to have surgery, and I would always tell anyone diagnosed with moyamoya to get bypass surgery.

There may be alternatives, but the risks with moyamoya disease are too high to fool around with.  With stakes so high,  I could only recommend the most tried and tested treatment, which has shown good results in hundreds and hundreds of patients.... and that is surgery.

Glad you are doing well, though, and I wish you the best.   

Jenny (mom to Daphne)
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Re: Avoiding Surgery with Keylation Therapy
Reply #9 - Sep 18th, 2006 at 5:34pm
 
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

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kotipup
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Re: Avoiding Surgery with Keylation Therapy
Reply #10 - Sep 18th, 2006 at 6:48pm
 
I won't argue that our healthcare system has some serious problems, and that some doctors care more about their paycheck than their patients (isn't that true in every profession?)   There are more than a few people on this board who were merely treated symptomatically, while their moyamoya went undiscovered, only to suffer disasterous consequences.

However, I think it is very unfair to say that surgery and medication is only prescribed to fatten the doctor's wallets.  Maybe in some cases, but I can think of several, incredibly caring doctors we have had the pleasure of knowing, and such a statement does a great disservice to them.   My daughter's cardiologist, for example, came to me after Daphne had her first stroke and I was in tears.  She is the head of the cardiac intensive care unit, and is an increadibly busy woman who exists on very little, if any, personal time.  Yet, she sat with me for more than a half hour, and told me of the many stroke cases she's seen where children made nearly full recoveries.  Her words gave me hope in a time of despair, and I am very thankful for the care she has always taken with Daphne.   Dr. Steinberg and his nurse practitioner are two other examples of compassionate, quality people.  They save lives every day, including my daughter's. 

I could go on and on about caring, highly qualified doctors we've seen, and I could also tell you about the doctors who brushed Daphne off, neglecting to give her the proper tests while she was suffering seizures, who let her get to the point where she had to suffer strokes before they found her moyamoya, and then - once they found it - told us there was no hope for her.

There are good and bad professionals, whether you are looking at plumbers, mechanics, teachers,  doctors etc.   You can't lump them all together.   

I do agree that doctors should have more training on nutrition and alternative healing, but I think that is a trend that is starting to come about in some places.  Also doctors are human, and can't possibly know about everything.  We, as patients, and parents of patients, are responsible for educating ourselves and making sure we get the care we need.

Jenny (mom to Daphne)
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Re: Avoiding Surgery with Keylation Therapy
Reply #11 - Sep 18th, 2006 at 7:36pm
 
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?!!!)


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Re: Avoiding Surgery with Keylation Therapy
Reply #12 - Sep 18th, 2006 at 11:37pm
 
Okay Okay Okay... this guy is a retard.  This post needs to be deleted before someone gets screwed by a quack doctor and dies.  I'd like to see Johns' films if they exist.  If they do, he's probably a walking time bomb.  There is a reason why the insurance doesn't cover it.  It is because it doesn't work.  DELETE this post please before someone gets their hopes up.

Jim
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« Last Edit: Sep 18th, 2006 at 11:44pm by James »  
 
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Re: Avoiding Surgery with Keylation Therapy
Reply #13 - Sep 19th, 2006 at 4:05am
 
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…
Do you still have moyamoya vessels present?
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
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Re: Avoiding Surgery with Keylation Therapy
Reply #14 - Sep 19th, 2006 at 9:08am
 
John -

I believe in the power of knowledge.  But, this knowledge must be substantiated with fact.  The only thing you have provided us with is your opion.  Mar has asked you for facts - you still have not provided us with detailed medical facts that we can base our judgements on.

I have to say, of the moyamoya experts that are out there - the ones that see moyamoya on a daily basis and have produced medical articles and papers - they have never, never claimed to have found a cure for moyamoya (and my surgeon, Dr. Scott, release an article on a study he did right after my 2 surgeries).  "Cure" is a strong word.  Especially when posting on a board with those afflicted with a disease that there is no proven cure.

How often do you go for MRI's?  Do you even know the state of your moyamoya disease?  Do you have moyamoya vessels?  Have they actually, proven to be, stopped narrowing?  Reversed the narrowing?

I know that when I was diagnosed, I felt like a ticking time bomb waiting for another stroke.  This is not something that you play with.  You get it fixed with surgery.  There is a time and a place for alternative medicine - this is not one of them.
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« Last Edit: Sep 19th, 2006 at 9:09am by STrantas »  

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Re: Avoiding Surgery with Keylation Therapy
Reply #15 - Sep 19th, 2006 at 1:17pm
 
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 -  Smiley, 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
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Re: Avoiding Surgery with Keylation Therapy
Reply #16 - Sep 20th, 2006 at 5:02pm
 
In my opinion Johns just a dumb   Smiley      thats ingnorant to medicine. I also think it should be yanked!
                     Nancy
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Re: Avoiding Surgery with Keylation Therapy
Reply #17 - Jul 9th, 2016 at 7:15am
 
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.
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