hi yassi,

i haven't had this particular problem yet (that i know of)... but don't be too worried about the amount of blockage, my left side was 100% (operated on almost 3 weeks ago and doing awesome), my right side is about 60-70% (not yet operated on) and one of the v-something arteries at the back is 40% or so, and they're all salvagable.... what it means in the neck though..... would it be a simpler procedure do you think? seeing as it's further away from the brain and therefore less complications, less likely to irritate the brain etc????
My guess also though is that it might be more delicate after surgery due to the mobility of the neck, but hey, i'd wear a neckbrace!!
They're just thoughts anyway (I spend a LOT of timing thinking about this, possibly a bit obsessed but hey...)...

hey pity those scans gave you headaches.. i didn't feel any affects... i also downed some AWESOME juice after each one with killer anti-oxidant ingredients to beat out the radiation.. hehe

as for my surgeon.. it's Dr John Laidlaw, in Melbourne.. wicked dude...

Hi Lena,

Thanks for the message. It is nice to know that there is someone else out there that it has affect their neck. My neurosurgeon said mine is the first case that it has affected the neck  that he knows of.

The good news in my case is that even with it being 80% blocked the surgeon said it will be too risky to do any type of surgery. He wanted to do angioplasty but because of my MM it will be a high possibility that I would have a stroke. So he said I may eventually need to have a bypass done. My own body has made its own collaterals and the blood flow on my left side is just fine. This is good news he said. The neurosurgeon said that I had it starting in July 2005 after he checked it when he was doing surgery on my right side. Mine has been stable.

I was wondering what type of surgery have you heard of for MM in the neck?

yassi

Hi Yassi.

I waited to respond to your post until I knew what your test results revealed.

My brother Kevin (Cubbie) has MM and originally had a significant stroke 4 years ago and at that time they thought he had FMD (Fibro Muscular Dysphasia) in his right atery in the neck but they said they really didn't know what it was. They surgically went into the neck and looked and closed it back up because they didn't know what it was.  At that point, I consulted a FMD specialist who said it was not FMD it was a dissected right upper internal carotid artery at the bifurcation. They said he had sufficient blood flow and said he didn't need surgery although he was having multiple TIA's at the time. They changed his meds and the TIA's subsided.

It wasn't until Kevin got worse (speech worsened and he was way off balance) that we finally received a diagnosis of MM (4 years later) and those docs (approximately 3 neurosurgeons, 2 vascular surgeons and 2 radiologist) said nothing could be done and sent him home to live out whatever life he had left. That's because they were unfamilar with MM and said there was no treatment.  At that time, his left carotid artery was 90% blocked. It wasn't until I found this site and found Dr. Steinberg at Stanford and sent Kevin's films to him for review that it was suspected that the MM collateral vessels strangled the right carotid artery in the neck. This is very different as we think of MM being internal not necessarily external.  Actually, no doctor had ever seen anything quite like this. Kevin's films are used as teaching tools for at least 2 major teaching institutions. So, MM can be in the neck. MM is a progressive narrowing and closing of the carotid arteries not arteriosclerosis.

I have to agree with Jill. I too am not a doctor, However, knowing MM is progressive, I have to believe that surgery to treat the MM is less risky than having  possibly a dibilitating stroke. MM doesn't go away or simply stop. It takes surgical intervention to treat MM. By the time Kevin got to Stanford, his bloodflow on the left was negative 2.

Kevin had two STA-MCA (direct bypasses) in May of this year by Dr. Steinberg at Stanford. I only wish we had found Dr. Steinberg and this site years ago before Kevin had a significant stroke that affected his speech and abstract thinking. He had signs of MM before he had a stroke and dissected carotid artery. At one point, his blood pressure was so high that his doctor called a squad to come to the office and take him to the ER. At that point, the ER said he had anxiety and gave him some meds and sent him home. Well, he had a major stroke. He also couldn't move his arm and hand but the movement has come back overtime. I'm not telling you Kevin's story to scare you but to realize that at least you have been fortunate to receive a correct diagnosis (unlike Kevin who went misdiagnosed and undiagnosed for 4 years) and take immediate action before something like a stroke occurs. I never have understood the comment "wait and see" what is it that they are waiting to see?

Iwould condult a MM specialist for a second opinion. At least you would know where you stand and possibly provide some peace of mind. I tell Kevin's story and MM journey in hope that I can save someone else from what he has been through. He was robbed of the life he knew. He was a pilot and flying was his passion, Unfortunately, Kevin will never fly another aircraft.

Yassi, I wish you only the very best. Please keep us posted and if there is anything I can do for you, please feel free to e-mail me.

Sincerely,

Lore

 

     

HI Monica,

From all the research I have done on the brain and its functions. I have not come across any other artery in the body that can be affected by our degenerative disease. I have found through my research that most cases of moyamoya has happened in the circle of willis. I  too would be interested to know if it could be in other parts of the body too?

yassi

Hi Everyone:

I am still waiting for the results of my tests from Dr. Steinberg. Its been almost two weeks and I have not heard from them. i call and e-mail and get no response. I am getting scared and nervous. What should I do? Hopefully I will hear something today. My spirits are real low.   

yassi

hey there... there were a few stream of topic in this one thread..
just wondering if anyone got follow-up info on moyamoya in the neck arteries?

Hi Emily

Last May on my folow-up visit,Dr Steinberg confirmed I did have MM in my right internal corotid artery at the neck region.

Hope i answer rhe question right.


Kevin

Hi Emily,

Kevin (Cubbie) is in warm sunny Florida......probably on a beach somewhere..... so I thought I would answer this for you in Kevin's absence.

At first, they thought the right upper internal carotid artery was dissected as a result of the MM vessels strangling the carotid artery.  However, that would have been external rather than internal and didn't really make sense as MM is the narrowing and closing of the carotid arteries which is internal not external.

Stanford took Kevin's dissected carotid artery that was simply laying in his neck (like a wet roll of paper towel) and researched it.  It was determined that the artery actually narrowed and closed and eventually dissected. So the dissection was a direct result of MM in its known form which is the internal (not external) narrowing and closing of the carotid artery.

As you are aware, Kevin had two STA-MCA direct bypasses in the brain to compensate and give blood flow as a result of the loss of the dissected carotid artery and blockage of the left carotid artery.

I hope I have conveyed this in a way that it makes sense.

By-the-way, did you go flying?  How was it? Let us know the details.

Hugs,

Lore