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Anyone experienced NEW narrowing post STA-MCA's? (Read 10380 times)
lotsofkids
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Anyone experienced NEW narrowing post STA-MCA's?
Sep 10th, 2014 at 2:12am
 
I am 8yrs post (direct) STA-MCA and (indirect) EDAS on both my right & left sides. (surgeries done at Stanford 8/2006) I was 100% occluded in both rt & left at the time of my surgeries.
I have recently been having increased dizziness, overwhelming fatigue and headaches. Unfortunately my latest 2014 testing has shown (MRI/MRA and Angiogram) that I have a brand NEW severe stenosis (just proximal to my original blockage) in my right ICA that is causing poor flow to both the anterior and posterior branches.
We are awaiting the surgeons opinions at both Stanford and Cleveland Clinic as to what (if any) options I may have. On a positive note.....the angio shows that the STA-MCA on both sides are performing well. ??

This seems quite atypical to have a recurring stenosis....although the neuro at CC said it is attacking where MM usually appears (in the ICA's)

Has anyone else had such findings or even heard of this?
I will keep you posted.

smiles....Diane
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Cherry (LuckyMe)
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #1 - Jan 20th, 2015 at 4:53pm
 
Diane,

My annual checkup MRI just showed that my MM has progressed into my neck. It shows 90% of the artery on my upper neck (near ear) are blocked. I'm waiting to do an angio next week. Kind nervous, not nervous about angio itself, but nervous about what the doctor can do for me? BTW, I had both side direct by pass 5-6 years ago, the by pass seems working well, but MM goes to the neck....what next? does anybody know what else can be done if it's in the neck? I don't think another by pass is an option since there's no self-owned donor artery available any more. Sigh.....

Cherry
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lotsofkids
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #2 - Jan 22nd, 2015 at 4:33pm
 
Cherry....I am so sorry to hear that your MM is progressing. Luckily....after my angio and upon discussing further with both the Cleveland Clinic and Stanford....it was not as ominous as it sounded. Doctor Steinburg has documented many cases where the occlusions have continued all the way down to the cervical neck area.(like yours) The important factor here is whether or not your graphs remain patent from your direct bypass. If those are providing decent blood flow....you are going to be OK. I guess it is sort of like a tree. If there is a water source available....the roots will venture out and find the water. If you have a blood  source.....your brain will reroute and tap into that flow.

So....what you want to see on your angio is that your graphs are open and providing good flow. If not....there are other options to try and garner more flow....like laying a muscle (indirect) on a section of your brain to "grow" more collaterals. Not optimal options...but still options.

It is never good to hear you have new occlusions....and I worry that although my brain is offsetting the new closures....it could be elevating my stroke or hemorrhaging risks. Nonetheless (thank God).....my body is doing what it should, under the circumstances. Neither CC nor Stanford felt my new occlusion warranted more surgery. (nor any future closures...IF my graphs continues as they are)

I was told as MM is a progressive disease....it will continue to progress....but it is only dangerous...IF there is no blood/oxygen supply.

I wish you'll pass your angio with flying colors....and will be able to take a well earned deep breath. Keep me updated...as I will be thinking of you. I hope this post has brought you some comfort....as I had the very same "hopeless" feelings when I heard about my progression.


If you wish to talk further....feel free to call me 330-603-6959
((hugs Diane))
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« Last Edit: Jan 22nd, 2015 at 4:47pm by lotsofkids »  

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Cherry (LuckyMe)
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #3 - Jan 22nd, 2015 at 4:54pm
 
Diane, doctor noticed minor blockage in my neck on 2008 when I just diagnosed with MM..  It only shows progression in 2014. But so far I didn't have any symptoms due to this newly progressed condition. Actually my STA-MAC surgery went so well that most of the time I don't even remember I'm a MM patient. I didn't have any TIA since the surgery and no numbness and dizziness. Only few minor headache, not a problem at all. I'm very active on sports and running. I thought I was totally recovered, until last summer, out of a sudden I start having high blood pressure (as high as 170/120) for months without any specific reason. My diet was very clean, I exercise regularly, I maintain a very healthy weight, I drink enough water, I work fulltime.......you name it, I did everything I (and the doctor) can think of, but after all said and done, my blood pressure still refuse to go down. So I did an MRI/MRA to see if it's anything related to MM....the local neurologist said that my blood pressure MIGHT due to the narrowed neck artery...I'll have the angio next Monday. We'll see...
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lotsofkids
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #4 - Jan 22nd, 2015 at 10:38pm
 
Well it sounds like you are doing all the right things on your end! Keep it up!
Hopefully the docs can (with meds) regulate your BP. I am very glad to hear your bypass's went well....as mentioned ^ it is really the most important factor in us MM'ers.

I do feel keeping connected and annual visits are a must with this disease....even if you seem to be feeling well.

keep me updated on your progress and wishing you a happy and healthy 2015!

-diane
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Talisa
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #5 - Feb 8th, 2015 at 12:11am
 
Hi.  I just want to thank you for taking the time to post here.  I had direct/indirect bypass 11/4/14 on my left side only.  I have narrowing on rt side but do not need surgery yet.  I've been keeping myself prepared in case it is needed when I was blindsided with symptoms on my right side all over again.  I had an MRI done Thursday and have sent my films off to Stanford (they did my surgery).  We'll see what happens.
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Talisa
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #6 - Feb 8th, 2015 at 12:21am
 
Also...I'm wondering how others are handling working with the stroke symptoms if at all?  I just got back to work after a 3 month leave of absence and it's happening all over again. In have no PTO.  I am afraid of losing my job.  Has anyone received permanent disability for MM?
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lotsofkids
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #7 - Feb 8th, 2015 at 3:44pm
 
Hello Talisa....and happy you found us here. (well sort of...sorry to hear you have MM)

If your films have been sent to Stanford (and they already have your history there) then you can be sure you are in good hands. Unfortunately, this is a progressive disease...but that doesn't mean all doom & gloom. It only means you will need to be aware of your body. Do not over stress yourself...and if you feel you need a rest, you probably do! Stay hydrated and on the aspirin dose that your doc prescribed for you. Many of us MM'ers have done remarkably well (baring some occasional hiccups)

As for work...you will know best how much you can handle. There are a lot of MM'ers working and also I know of others that are on permanent disability.  For some...they were approved quickly and many that had to fight for it. I would suggest it might be a good investment to have a lawyer helping you through the process.

As for me personally....I have been a stay at home mom....for my busy family. I sometimes feel I work harder than if I had an outside job....although, being at home, I have the benefit of "not" working when I have a health issue.

You are still in the early post surgery months. Frankly....I am now 8 years post surgery and it took a good year for things to kick in.

I hope you get encouraging news from your recent films and just need some R&R. keep us posted...and ((hugs))
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #8 - Feb 18th, 2015 at 8:54pm
 
So happy to find this site!!!! My daughter who is 20 was finally diagnosed with Moyamoya on July 3rd, 2014. (after over 2 years of issues). She had direct by-pass on July 30, 2014 and all went "perfect" according to her surgeon.  In October we had a scare with possible TIA/seizure so the doctor wanted to schedule an angiogram to see how things looked.  She has been symptom free since, so of course, the one time I don't worry we get disappointing results! The by-pass was not visible and the interventional neurologist said it appears the surgery did not take.  I haven't been able to find any info on this happening and we are not scheduled to see the surgeon until next week for more answers.  Just wondering if anyone has experienced this?  Is there anywhere in South Florida  to go for help with this disease?   I know I should be patient and wait till next week but I figure the more info I have the better as I make my list of questions for the doctor!  Hope to hear back from someone soon.  Thanks MW
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« Last Edit: Mar 1st, 2015 at 2:11am by MW12 »  
 
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willowz
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Re: Anyone experienced NEW narrowing post STA-MCA's?
Reply #9 - Jan 15th, 2016 at 5:26pm
 
Just want to chime in that MM is not cured with surgery, the surgery just mitigates the symptoms. They don't know yet what causes MM or have effective medications for it. Stay hopeful and watchful. Sometimes they use stents to combat narrowing arteries, whether its applicable to the neck issue would be something to take up with your doctor.
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