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Blood Pressure (Read 3894 times)
Hikaisista
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Blood Pressure
Jan 28th, 2005 at 12:59am
 
Hi Everyone,

I have recently been diagnosed with Moyamoya after having three TIA's ... with the last one sending me to the hospital.  I did have a minor stroke but have not sustained any lingering effects from the stroke.  After having all of the imaging done  (2 MRI's, 2 Ct scans, an x-ray and finally an angiogram) in the hospital, my neurologist has determined that I have Moyamoya. 

I am currently waiting to hear back from a neuro-surgeon at Duke University as to whether I need the surgery or not.  I am currently on 75mg of Plavix, which seems to be the normal course of action until such a decision is made.  I am currently also not working because of the stroke and also waiting to see what I will be doing about my condition.

I have several questions:
1.  I am currently having problems regulating my blood pressure.  It is fine when I am resting at home but as soon as I venture out, it goes up.  My primary doctor is considering putting me on a beta blocker but will consult with my neurologist.  Is this a normal symptom of Moyamoya?  I am worried that if I am put on hypertension meds, that I might suffer a stroke.

2.  Has anyone had their surgery done by Dr. Fukushima in North Carolina?  If so, please let me know how it went.

3.  If I do have the procedure, what is the normal recovery time?

I just have to say that this is a great site!  It has provided me with a lot of information and comfort knowing that there are others that have Moyamoya.
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Seachelles
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Re: Blood Pressure
Reply #1 - Jan 28th, 2005 at 6:31am
 
Welcome to the site.  Glad you were able to find us.  We are all here to support you in any way we can. 

It is my understanding that if you have been diagnosed with Moyamoya, then you will need one of the surgeries and quickly since you did have a small stroke. 

Before my surgeries, I had problems with my blood pressure and pulse being high.  I was on a beta blocker called atenolol at 50 mg. twice a day which is a pretty high dosage.  Right before my surgeries, I was taken off the atenolol by Dr. Steinberg and was not told to continue it after the surgeries.  However, when I got home, my pulse started running high again (over 100 at rest) and was put back on a smaller dosage of 25mg twice a day and it has regulated my pulse but still kept my blood pressure a little higher than the standard 120/80 which is normal.  How high is you blood pressure running?  I know they like you to go into the surgery with a little higher than normal blood pressure.  I can't tell you if this is normal though with moya moya.

Also, as for the recovery time, I think it depends on the person and the situation.  Everyone is different.  I think others here would echo the same to this as well.  It's really hard to say what the recovery time would be for you.  There are a lot of factors that go into that.  For instance, mine has taken me 3 months and that was because I had a small stroke after the surgeries that left me with a small disability that I have gone to physical therapy for.  And I'm sure others have their stories to as to how long it took them to recover. 

Hope this helps!  And good luck to you. 

Michelle
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Michelle
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LynnePat
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Re: Blood Pressure
Reply #2 - Jan 28th, 2005 at 10:21am
 
My Son who is 18yrs old had high blood pressure before the surgery. He longer has high blood pressure. He was on the same meds as you. His CT scan showed he also had a stroke. He had surgery done in Dec and is still recovering. He takes it one day at a time. Did they find it on 1 or both sides? Everyone is different on recovery. I am glad you found this site its wonderful.

Lynne
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Hikaisista
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Re: Blood Pressure
Reply #3 - Jan 28th, 2005 at 12:03pm
 
Thank you for your replies!   Smiley

My current blood pressure ranges from a resting 117/84 to a 160/101 when I start going out.  I have my neurologist's appointment today so I guess I will see what he has to say.

Thanks again!
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gotchlorine
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Re: Blood Pressure
Reply #4 - Jan 28th, 2005 at 12:34pm
 
Dear Hikaisista,

Welcome to our MM family!  I'm sorry you had to find us, but this is a great place to come for information and support.

The most important thing you can do for yourself is to work with a specialist who deals with MM on a daily basis.  Many neurosurgeons are familiar with the disease, but there is a big difference between being familiar with it and constantly working with it.  If you haven't already, read the thread above this one "Diagnostic process and questions for surgeons".

If you are told "Let's wait and check you again in 6 months" (or something similar), I would strongly suggest getting a second opinion, as waiting could be inviting disaster. 

Good luck to you as you determine your course of action.  Please don't hesitate to ask more questions - the more informed you are, the better your decisions will be!

Warmly,

Jill

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mark
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Re: Blood Pressure
Reply #5 - Jan 28th, 2005 at 2:44pm
 
Hello,
  Ditto what Jill said as well as everyone else.  Move quickly.  If you are not satisfied with the answers get another opinion.  If you read through this site you will surely see that everyone has had something different happen.  Don't be intimidated by anyone.  If the Drs. seem to delay things a bit it's probably because they don't have a lot of experience in treating this.  I'm not sure of the blood pressure.  Mark didn't seem to have a problem with that.  However they did keep it at different levels during the ptocedures.
                         Ron
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debs
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Re: Blood Pressure
Reply #6 - Jan 28th, 2005 at 3:57pm
 
Dear Hikaisista,

I was diagnosed with mm in 1997 & had both surgeries (sta/mca) in 1998 with Dr. Steinberg at Stanford. Regarding blood pressure, I was told that higher was better to keep the purfusion in my head.  I was always worried that mine was 140/95 or more but (at the time) was told not to worry.  Over the past 2 years I have developed many heart related problems & still wonder whether having higher blood pressure for all those years is a contributing factor.  I am now taking Norvasc to control bp for my heart problems but do have much more dizzyness & headaches with the lower bp.  I also take plavix for my heart condition.

With recovery time, I agree that it's individual, but, in general, it used to be that if after 5 years from surgery of having good checkups (I'm not sure what tests they use now~~it used to be the xenon tests), and if you are pretty well free of symptoms that  you could have a complete recovery.  (NOTE:  If someone knows differently, please let me know if this has changed!)

One more thing:  You might want to talk with your doctor about adding an aspirin each day.  Plavix works on sticky platelets & aspirin helps to thin your blood.  It seems that most of us are on the 1 aspirin/day regimen.
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Mar
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Re: Blood Pressure
Reply #7 - Jan 28th, 2005 at 5:08pm
 
Hi Hikaisista,  Smiley Welcome to our mm family!

I would just like to reiterate what Jill said; I too believe it’s so important that you have an experienced MM specialist/neurosurgeon to address your diagnosis. I’ve spoken with mm patients here on this website, that have had their high blood pressure regulated or lowered with meds, only to find out later from an expert on mm, that they would prefer your blood pressure at a (safe) high, to keep the best possible blood flow to the brain, in hopes of preventing a stroke until surgery. Mind you, every case is different, depending on the blockage, but that’s why it’s so important to have a mm specialist, one that is more qualified and aware of these important details and the many factors involved. In my family’s case, the doctors said wait to have the surgery, and my niece had 4 debilitating strokes and unfortunately that’s been the case with many with this disease because of the lack of knowledge. So that’s why we always emphasize a doctor with experience.

As far as recovery time goes, as stated above, it varies with each patient, but DJ was putting this website together and posting the same day after his surgery… amazing, huh?

I too again can’t emphasize enough what Jill said… READ, READ, READ all you can about MM, you’ll feel much more confident and comfortable with your decisions in the future. Just my  Smiley
In the mean time, feel free to ask us any questions.

God bless,
Mar
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jlhazelwood
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Re: Blood Pressure
Reply #8 - Feb 2nd, 2005 at 11:49am
 
I live in Greensboro, NC, and in 2000, I went to Boston for two weeks for my surgery with Dr. Scott at Children's Hospital there.  I don't regret that decision at all.  Dr. Scott saved my life, and the people there at Children's Hospital are the very best.
Whatever you decide, God be with you.
Joanna Hazelwood
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Hikaisista
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Re: Blood Pressure
Reply #9 - Feb 2nd, 2005 at 6:54pm
 
Wow!  This is just a wealth of knowledge!  I am still waiting to hear back from the neuro-surgeon in North Carolina.  I will also be consulting a local neuro-surgeon who has done by-passes here in Hawaii.

I hope to make a decision soon.  In the meantime, I will continue to rest and hope for the best.  I will be seeing a cardiologist next week.  My blood pressure continues to be all over the place but seems to be the norm for MM.

Mahalo everyone for your great suggestions!  I wil continue to read everything!
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