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Use of Marijuana/Canabis ? (Read 2695 times)
susan
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Use of Marijuana/Canabis ?
Feb 22nd, 2010 at 9:27pm
 
Would like to find out what effect using marijuana has with Moya..?† Undecided My neuroligist has ok'd me to smoke a little at night due to leg tremors from RLS.† Any info would be terrific!† thanks..† susan from IL..† 2 yr anniv of double surg's at Stanford!† wooooohoooooo !† Grin
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Re: Use of Marijuana/Canabis ?
Reply #1 - Feb 22nd, 2010 at 9:48pm
 
Hi Susan,

Very interesting! Wow, as long as Iíve been active on this site, I never once remember this being discussed. I wish I had some kind of info for ya, but I just donít know the effects of marijuana and MM. Iíd be very interested in hearing what a MM specialist has to say about it.

Since you went to Stanford, couldnít you e-mail Teresa and ask her if sheíll ask Dr. Steinberg what he thinks about it?

Until we know, all I can say is..enjoy! Smiley

Mar
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Little Luca
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Re: Use of Marijuana/Canabis ?
Reply #2 - Feb 23rd, 2010 at 1:38am
 
Hey Susan

Not sure about your smoking query either, but congrats for your two year anniversary.

Take care
Mark (Luca's Dad)
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1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
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hrsridermom
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Re: Use of Marijuana/Canabis ?
Reply #3 - Feb 24th, 2010 at 3:14pm
 
Destin's doctors told her No smoking, no drugs!  Could be because she's a teen and they decided to plant that seed but my understanding is that it causes the blood vessels to constrict which is not good with Moyamoya.
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Emily
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Re: Use of Marijuana/Canabis ?
Reply #4 - Jun 13th, 2013 at 8:59am
 
no no no... marijuana is a vaso-dilator.. it opens blood vessels up, increasing blood flow but only mildly, not enough to stress mm vessels.

the only possible problem with marijuana use is it decreases the blood flow at the base of the brain (again minutely), so if you have narrowed/occluded basilar arties, this could be an issue. however there are very very very very few cases where vertebrobasilar arteries are effected.. and often after surgery (to the superficial/middle cerebral arteries) these (at the back) will open up a little..
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Lilian
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Re: Use of Marijuana/Canabis ?
Reply #5 - Jun 13th, 2013 at 4:07pm
 
No!

I once hung out with people who smoked marijuana and it had a very very bad effect on me.
I nearly passed out, I was trembling, cold, I was crying without knowing why.
It may have been because there were so many of them using it( I am from the Netherlands where it's legalized so don't be alarmed by my choice of friends:) )
I would recommended you not to do it.
It's not even worth trying.

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pnw_panda
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Re: Use of Marijuana/Canabis ?
Reply #6 - Dec 22nd, 2013 at 1:46am
 
i think this would be a case by case type of deal.
i discovered i had mm at 9 years old,  had surgery at 11 & 12. and now am 24 years old. i have been consuming/smoking cannabis since i was 19, and every time i go into a check up with my neurologist he is always impressed and very pleased with the results. granted he is unaware of the cannabis consumption, ill be discussing this with him on my next check up which is very soon, and ill will be sharing the results and what he had to say.
and @lillian sounds like it was your first time, nearly passing out or feeling extremly sleepy is a common side effect, and trembling feeling cold and tearing up is probably from anxiety or again the first couple times of use.
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mea98pkl
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Re: Use of Marijuana/Canabis ?
Reply #7 - Dec 22nd, 2013 at 5:08pm
 
Think more research needs to be done in this area, in terms of the benefits of marijuana from a neurological perspective:

Google this: sploid gizmodo Watch the amazing change when this woman with cerebral palsy smokes pot

And click on the first link (forum won't let me post links)

It's an amazing video that shows the effects of marijuana on a woman with cerebral palsy. (I'm not equating CP to MM by any means, merely to say that marijuana is not always "evil" - in small controlled doses it seems to benefit certain ppl with certain conditions.)
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Lilian
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Re: Use of Marijuana/Canabis ?
Reply #8 - Dec 24th, 2013 at 10:51am
 
pnw_panda wrote on Dec 22nd, 2013 at 1:46am:
i think this would be a case by case type of deal.
i discovered i had mm at 9 years old,† had surgery at 11 & 12. and now am 24 years old. i have been consuming/smoking cannabis since i was 19, and every time i go into a check up with my neurologist he is always impressed and very pleased with the results. granted he is unaware of the cannabis consumption, ill be discussing this with him on my next check up which is very soon, and ill will be sharing the results and what he had to say.
and @lillian sounds like it was your first time, nearly passing out or feeling extremly sleepy is a common side effect, and trembling feeling cold and tearing up is probably from anxiety or again the first couple times of use.†


Well, I live in the Netherlands, use of cannabis is fairly common around here,( nobody gives you a strange look when you say you smoke cannabis) especially among the crowd I used to hang out with. I think it was overkill rather than it being a first time( which it wasn't) And I still feel uncomfortable when people smoke the stuff in my neighborhood.
I don't have anything against it, people should be able to do drugs if they want to. As long as it's not too often, it's a terrible thing to get addicted to.
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corynski
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Re: Use of Marijuana/Canabis ?
Reply #9 - Jan 22nd, 2014 at 8:14am
 
My son's Moyamoya wasn't discovered until he had a stroke in the Walmart back in May of 2013, at age 40.† He then had surgeries done on both sides by Dr. Mericle in Nashville, Tn. in Dec 2013 and is recovering now.  The surgeries went well as is the recovery.

He smoked cannabis off and on from age 15 until the stroke, and it doesn't seemed to have affected him.† After the stroke he stopped both cannabis and alcohol.

Perhaps we'll know more when some studies are finished that are going on now, especially since more states are legalizing the medical use of cannabis, finally......† You can bring up the IACM, the International Association for Cannabinoid Medicines, and find some information.

Also I saw that the National Institute of Health does studies on Moyamoya, so just google NIHR and look for ongoing studies.

charley

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thesvtuautox
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Re: Use of Marijuana/Canabis ?
Reply #10 - Feb 14th, 2014 at 12:21am
 
pnw_panda wrote on Dec 22nd, 2013 at 1:46am:
i think this would be a case by case type of deal.
i discovered i had mm at 9 years old,† had surgery at 11 & 12. and now am 24 years old. i have been consuming/smoking cannabis since i was 19, and every time i go into a check up with my neurologist he is always impressed and very pleased with the results. granted he is unaware of the cannabis consumption, ill be discussing this with him on my next check up which is very soon, and ill will be sharing the results and what he had to say.
and @lillian sounds like it was your first time, nearly passing out or feeling extremly sleepy is a common side effect, and trembling feeling cold and tearing up is probably from anxiety or again the first couple times of use.†



Did you ever speak to your doctor about marijuana usage with moyamoya? 

I am very curious as to what the doc will say. 

I got my sta-mca in South korea, and Marijuana is very looked down upon over there, so im not sure if i feel comfortable asking my doc about it.  Nor would he fully understand the effects of marijuana since virtually non are available in korea.

I got my surgery done in 2012, and have smoked few months after the surgery, and during check up (MRI, CT) at 6 months and 12 months mark,  nothing showed up as problematic and my doc has said that surgery went well and it everything seems ok. 

So the emperical evidence says its no big deal in my case, but i still cant be 100%.
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OneStoneTwoBirds
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Re: Use of Marijuana/Canabis ?
Reply #11 - Feb 28th, 2014 at 2:51pm
 
Well, OK...here goes.

My husband was a daily cannabis user for over 35 years.  He was diagnosed with moyamoya in July 2013 at the age of 58 while undergoing treatment for bladder cancer.  He passed out in the bathroom, hit his head on the wall, and when he finally went to the ER, they did a CT scan and found evidence of an "old infarct."  Because of the head issue, they did CT and MRI and MRA and the neurologist at the cancer center was completely baffled, because he'd clearly had a significant stroke somewhere along the line that he hadn't been aware of.  And he was fully functional.  A whole parade of neurologists, radiologists, and neurosurgeons could not believe that he had MM to the extent that he did and passed every bedside test known to the profession.

Long story short -- he had a carotid angiogram because when they see a middle-aged guy with narrowing of the carotids, they think atherosclerosis.  But he had no arterial plaque, just "classic" moyamoya -- both sides, more severe on the right.  The situation was called "tenuous" so he had surgery 3 days after the angiogram.

He did great except that he was inadequately hydrating...and 4 weeks after surgery he had a sizable stroke that went into seizures...he went status epilepticus and never woke up.

I think it is entirely possible that as much as it bothered me, his heavy cannabis use may very well have been what kept him alive and functional until age 58.  Doctors will never tell you to use it for that purpose, and I'm not either.  But given how his scans looked, and given how the moyamoya vessels in his brain just started popping (as shown on the scans) once they tried to take him off the ASMs, he clearly had a severe case of MM but lived 58 good years.  I try to take comfort in that.
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corynski
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Re: Use of Marijuana/Canabis ?
Reply #12 - Mar 6th, 2014 at 10:02pm
 
TwoBirds

Thank you for your post, I think it's good we learn as much as possible from each other.† My son was a 'blue baby' at birth, from rubella, and had heart surgery before one year, but no one discovered his MM until he had a stroke at 39 years old.† He seems to be recovering better now, and he's back to work as an auto mechanic 8 weeks after his 2nd surgery, by Dr. Mericle in Nashville.

The subject of medical marijuana has finally been making big news, and it will be years I guess before they ever learn what all it may be useful for.† My son smoked while growing up, and at a recent visit I noticed he is smoking again.† Perhaps it is beneficial for MM, and maybe even for my peripheral neuropathy.† What has happened is that marijuana in years gone by was high in THC, for the mind bending experience, but it's difficult to function at a job while smoking.† So now they are developing a low THC and high CBD medicinal plant, which doesn't carry the 'stoned' effect, but does quell epileptic seizures they've already found out, and hopefully it will serve other purposes.

Foreign research is outpacing research in the USA now due to the Schedule 1 category of cannabis here, and people are hesitant to work with it.† But then recently I read that the Epileptic Association is requesting that it be removed from Schedule 1 so more research can be done.† We'll see.† Most people shouldn't fear cannabis though, since it's been a medicine for thousands of years.† I've enjoyed it for 55 years now, treating Restless Leg Syndrome mainly.

charley
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corynski
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Re: Use of Marijuana/Canabis ?
Reply #13 - Oct 31st, 2014 at 7:02pm
 
Greetings all.....

I'm sorry to say my son William has developed recurring headaches,† now 8 months post 2nd surgery, sometimes quite strong during the days and somewhat better at night.

There's been much interest lately in cannabis that is high CBD, low THC, that does not produce a high, but has been successful with epileptic seizures and some other problems.† So I emailed Joel Stanley, the head of an organization called Realm of Caring, in Colorado.† They specialize in this particular CBD strain.† Perhaps a long-shot, but nevertheless, if Willy's rubella and deafness were caused in any way by genetic problems perhaps there could be some help.† I'll know something shortly, hopefully.........

charley (Willy's father)
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corynski
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Re: Use of Marijuana/Canabis ?
Reply #14 - Sep 12th, 2015 at 11:37am
 
Greetings All

I'm here again to see if I can find any more information about moyamoya and cannabis.  Since my earlier posts there has been considerable interest in mmj, especially since it's been proven now to be  of benefit for epilepsy and other problems.

Is anyone aware of research being done with cannabis and moyamoya?  Please post if you know of any leads l might follow.  My son's headaches have not really improved, nor the photophobia and heart problems.

charley
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corynski
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Re: Use of Marijuana/Canabis ?
Reply #15 - Jan 17th, 2018 at 2:23pm
 
Greetings....... How time flies.  It's now January 2018 and I'm writing again regarding my son William.  It's been 4 years now since his Moyamoya surgery, but he's not seen any significant improvement.  And about a year ago he required heart surgery, from which he has recovered well.  I've come back to the site here to see if there are any more deaf individuals with Moyamoya disease that he could communicate with.
So, please respond if you are deaf and have moyamoya or know of someone who does.  Willy would appreciate corresponding.....

Thanks
charles coryn
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Rabindra
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Re: Use of Marijuana/Canabis ?
Reply #16 - Feb 13th, 2018 at 11:52am
 
Have you guys ever tried using cannabis for medical purposes? I have been diagnosed with glaucoma for almost a year now and I've been searching any alternative medicine that can help me then i came across this article that says marijuana can be used to treat and prevent glaucoma. I've been planning to try this kind of strain here in http://www.ilovegrowingmarijuana.com/u2-kush/ but i have no idea where to start or buy. Can you guys give me any tips or any ideas that can help me? Thank you!
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