So, this is where I am at.  I have to ask -- for those of you who are pretty far past your surgery -- what long term issues do you have with living with moyamoya?

If you had a stroke, you have those issues.  This I know, but this is individual to each one -- due to strokes being different.  

Here is something of what I mean:
Anethesia is a big concern when you have the initial surgery, and will actually continue to be throughout life.  Certain precautions must be adhered to each and every time general anesthesia is needed.

I ask this question because my son has blood pressure issues.  He currently has a borderline high systolic (the top number).  In my initial research of moyamoya (actually provided by the residents who had to research it themselves while I was captive in the hospital with my son  ;) ), I found a statement that said moyamoya brains deal better with high blood pressure than low blood pressure.

Has any doctor (for moyamoya) given an opinion for optimal blood pressure levels?  Too low, and the patient can have problems all over again . . .

Kim

Kim,

Hi... I was told the same thing you were.  For children with moyamoya, blood pressure being on the high side is better than being on the low side.   You don't want it really high, but borderline high-normal is OK.

Higher blood pressure is going to give greater profusion to the brain, and low blood pressure can cause MM symptoms (i.e. fatigue, TIAs)

As far as other long-term issues, we've been told that Daphne can not wear helmets (which could restrict blood flow) or tight-fitting glasses. -- anything that could pinch off the STA arteries that are supplying her brain with blood.

Also, for Daphne's heart defect, which is a narrowing of her aorta, we read that heavy weights were off-limits.  I don't know if this applies to MM, too.

Jenny

Kim,

Although Kevin is older and had a stroke that affected his speech and abstract thinking, he too was told that a high blood pressure, again, borderline high to normal, is best.

Lore

Hi Kim

I had my surgeries 4 years ago (STA-MCA bypasses on both sides) and now only experience occasional headaches. My neurosurgeon has basically told me he doesn't need to see me unless I experience problems!!

I still occasionally can't find the words I want to use but that comes back in a short while and I remember, and sometimes short term memory is a problem, but apart from that I am more active and fit now than I was before MM (go to the gym 5 days a week etc...)

Now on the subject of anaesthesia - I have recently undergone anaesthetic on 4 different occasions - not related to my MM - over the last 2.5 months and came through fine.
My neurosurgeon told me that the CO2 levels had to be kept higher and although I had different anaesthetists for these procedures, I got them all to liase with my original anaesthetist who did my STA-MCA's and my neurosurgeon wrote an explanatory letter about what the anaesthetic should be run at.
Hope this is of help to you
I do feel awful when there are people who are on this site that are experiencing ongoing problems, and I am able to go back to how I was before surgery with little or no problems - there is hope!
Moira

Hi Kim,

I'm actually dealing with high blood pressure issues as we speak.  My doctor recently changed my medication from Procardia to Dynacirc and Cozaar because Dynacirc is suppose to not only lower your pressure, but is also suppose to provide better blood flow to the brain area.  Anyway, I returned to work last week, and my pressure got up to 164/117 with my pulse at 52 bpm!  That scared the living daylights out of me!  :o  I've also been experiencing headaches, but I'm thinking it's related to my elevated pressure.  I'm not working again, so I'm monitoring my pressure this week to see if it goes back down.  I'm now 4 months post-op, and although I know we're all different, I wonder what's wrong with me when I hear about others (i.e. itsme  ;)) returning to work even sooner...

I too was told that it is better for my pressure to be slightly elevated than too low.  If it's too low, then there is a chance that the vessels will collapse.  However, I think my bp is too high right now.  High bp also has an affect on one's  [smiley=heart.gif], so I know high bp for a significant period of time isn't good as well.

After reading others' posts to your question, I'm wondering what "borderline high" means? 120/80-140/90?  [smiley=huh.gif] What does it mean in terms of numbers. So..to Google I went and found some info... One thing to remember, many things I find on Google doesn't take MM into consideration*, so I always have to remind myself of this.  Thus, as said millions of times on this site..it is very important to seek medical advice from a MM specialist.  ;) ;;D

"Uncontrolled mild-to-moderate hypertension will reduce the life expectancy of a typical 35-year-old person by 16 years. Even the mildest form of high blood pressure, "borderline hypertension," can cut your life span by two to four years.*" http://www.healthsquare.com/fgpd/fg4ch02.htm

This article focuses on children, but I'm sure "adults" could also be substituted here... [smiley=twocents.gif]

"The risks of the surgery seem to be more due to the risk of being under general anaesthesia for an extended period of time then to the actual surgical manipulations. The moyamoya vessels and the involved brain are very sensitive to changes in blood pressure, blood volume and the relative amount of carbon dioxide in the blood. When awake, the Childs brain is able to regulate these factors fairly well. However, under general anaesthesia these parameters are much harder to artificially control and this can lead to bleeding or strokes. It is crucial for surgery that the anaesthesiologist have experience in managing these children as the type of anaesthesia they require is very different from the standard anaesthetic children get for almost any other type of neurosurgical procedure." http://www.health.adelaide.edu.au/paed-neuro/vascular.html

http://www.sutterhealth.org/health/hi_hbp-guidelines.html

Is Matt on any bp medications at the moment?

I am also in a delima about anesthesia and bleeding as well.  And, I know that many, if not most of us are on some type of blood thinning medication which may attribute to us bleeding a little more than the average person.  I'm actually in the process of checking with my neurosurgeon to see how long he recommends I wait to go under general anesthesia after my surgery.  I've read other posts where people went under general anesthesia couple of months after...and in some cases even sooner when they had both sides done.

Well...I look forward to reading other responses to your post.  Hope this helped a little..

Take care,
Shan

Shan,

Thank you for your support, input, and research.  

Matthew is not currently taking any medications.  They want to start him on 5mg of Fosinopril.  It is an ACE inhibitor (and basically smoothes the vessel walls to improve circulation).  

However, I emailed the doctors back (we ALWAYS communicate through email -- to prevent telephone tag  ;;D )  and told them they needed to do more research first.  I know, for a fact, that Matthew is the only MM pediatric patient at the Univiersity of New Mexico Hospital.  One of the docs knows some other docs in Seattle who had a similar patient -- so I told him to contact them.

Right now we are going to try a low salt diet.  But considering that I don't cook with salt, and our house is pretty low salt already -- that will be difficult.  But it is worth a try.  Being a kid, the fastest way to make Matthew crave something -- tell him he cannot have it.

Kim

I was told by the docs at Stanford to aim to keep my BP around 125/85-90 (border-line high!).  You are correct in saying that having borderline-high BP is better for MM patients than low BP. I have quite low BP (100-90/75-65), so I am aware and have frequently inquired about this problem. I get very dizzy everytime I stand up. Just my 2 cents...hope this helps.
Take care,
Stephanie

Hi Kim,

I think it's great that you can communicate with Matthew's doctors via email (as long as they reply in a timely manner).  ;)  I do know how it feels to play phone tag! :-/  Anyway, I'm wondering...although this is only a bp issue, since Matthew has been diagnosed with MM, could you seek the advice of Dr. Scott, a pediatric MM specialist, just to see what his take/views/recommendation is on this issue?   [smiley=huh.gif] I'm sure he has seen other MM children who may have also experienced bp issues.  [smiley=twocents.gif]  I just know how you feel about having limited resources in your area.

Stephanie,
Wow, you do have somewhat low pressure. This may sound crazy, but is there medication to "raise" your pressure?  Just wondering, what does one do to increase or raise their pressure when they consistently have low pressure? (As you know, I'm at the opposite end of the spectrum as you...trying to keep the darn thing down  :P)

Take care,
Shan

Low blood pressure runs in my family and it has been a concern since Tylers diagnosis. It usually isn't a problem until after the 30's. I have to be careful about how fast I get up. The doctor said it's only a problem when it raises to normal too fast.

I just worry about when Tyler gets to over 30 and if it will bring him any trouble.

I am in the boat of border line high category...typically in the 130/90 to 140/90 range...and my neurologist wants to keep it there for MM reasons.

On the other side, my general physician wanted me to lower it with medication for other health reasons. I told him what the neuro said....since they are friends (as my GP recommended my neuro...and are college buddies)....my GP picked up the phone and called my neuro....it was funny hearing my GP say..yes, ok...didn't know that...are you sure...really...Needless to say, I am NOT on any blood pressure regulators.

Moral of this story...listen to you MM doctors, as they are much more in tune with the disease.
Have a good day,
Greg

Shan,

I have contacted Dr. Scott.  That was actually how I ended up here!!  I had to do a google search to refind his email address.   ::)

Dr. Scott said that since it has been six years -- and Matthew has had good results from the revasculariztion, he can have his blood pressure lowered to "normal" levels.  He just cautioned that we do it "gently."  In other words -- not all at once.

I have told Matthew's nephrologists this -- and they even asked what Dr. Scott had to say before I had the answer.  I do like his docs -- they just tend to forget about Matthew's "specialness."

Kim

P.S.  I do know there are meds that raise bp's.

wrote on Oct 3^rd, 2005 at 10:04pm:

I still occasionally can't find the words I want to use but that comes back in a short while and I remember, and sometimes short term memory is a problem, but apart from that I am more active and fit now than I was before MM (go to the gym 5 days a week etc...)

hey moira..
just wondering with your reference up there, what sort of symptoms did you have before surgery?
at first i didn't seem to have any permanent side affects from my strokes... but i have noticed (now that i'm paying attention) that i often lose coordination and/or motor skills in my right limbs and i often lose my train of thought or can't find words for what i'm trying to say.....

has your symptoms lessened after surgery?

Hi Emily,
I just sent you a PM without reading this post. Sorry!
Before I found out I had MM, I used to get really bad headaches and numbness and tingling in my arm and fingers. I had a TIA - lost all feeling on my right side, couldn't talk, couldn't walk etc but that passed in about 10 minutes. My husband came home from work and took me straight to the doctor who admitted me straight to hospital. The neurologist who I had never met before that day, ran lots of tests - CT, MRI, Doppler and Angiogram and diagnosed MM. I then met my neurosurgeon - Emil Popovic - who had come to live in Perth from Melbourne. (He is an ex Royal melbourne neurosurgeon) They found from the angiogram that my left side was occluded, so I had a STA-MCA bypass. After I returned home I had a few teething problems, like not being able to remember phone numbers or look things up alphabetically in the phone book, but I had fantastic help from my husband, who took 3 months off work, and my mum in law who would organise everything so that I could follow it. This propbably went back to normal within 6 weeks. I then chose to have my right side done within 6 months, as Emil suggested that it may be a good idea to get it done while I was still young enough to recover well. So I did and they found that the right side was actually in worse shape than my left side. But that all went well - the only problem I had after surgery was bad headaches, which settled down, but I do still get bad headaches, but I live a more active life than I did before MM. So no, I haven't head any long term effects. They found on my MRI that I had experienced a lot of silent strokes that I never knew I had, but am very fortunate that i have had no residual effects from them. My mum in law was actually commenting the other night how she can no longer pick up any hesitancy with my speech, when I couldn't remember words i needed to use. Emil has also given me the all clear in the fact that I don't have to see him unless I experience symptoms. I have since had another baby, and go to the gym 5 days a week, doing 1.5 - 2 hour workouts most days as well as cardio and Pump classes. I am about to enrol in a spinning class, which I am looking forward to. I just want to reassure you that there is life after MM, Unfortunately we have all had to endure the MRI/MRA's and thre angios after surgery, but the Angios do get to be a little less unpleasant the second time etc...
Hope this is of help to you
Moira