I'm trying to put together a survey that will give us a better understanding of what we've all been through and I need your help!

Feel free to add, delete, change around anything you would like to see/not see in the survey.

KEEP IN MIND... each question must be worded as yes/no type question (i.e. no 'write-ins').  I'm working on getting some new software that will allow a more in depth survey, but thats gonna take some time.  For now, this type survey will be interesting to look at.

Here's what I have so far....

1. Your gender
Male
Female

2. Your age when diagnosed with Moyamoya
0-9 years
10-19 years
20-29 years
30-39 years
40-49 years
50-59 years
60+ years

3. Your age now
0-9 years
10-19 years
20-29 years
30-39 years
40-49 years
50-59 years
60+ years

4. What were the symptoms that caused you to seek medical attention?
TIA's (numbness, tingling, confusion, tremors, etc.)
Minor stroke (more than a TIA)
Major, full blown stroke
Seizures
Brain hemorrhage
Other

5. What tests did you/have you had done?
MRI
MRA
CAT scan
Doppler/ultrasound
SPECT
Cerebral angiogram
Xenon CT
Other

6. Were you diagnosed with MS before being diagnosed with Moyamoya?
Yes
No

7. Do you have Down's Syndrome?
Yes
No

8. Does anyone else in your immediate family suffer from Moyamoya? (mother, father, brothers, sisters)
Yes
No

9. Have you had surgery for Moyamoya and which surgery did you have?
EDAS on one side
EDAS on both sides
STA-MCA on one side
STA-MCA on both sides
Other surgery
Haven't had surgery


Ok, there's a start!  EDIT AWAY!!!

Medications, permanent damage, recovery????

forgot to add something to # 9, how about EC-IC Bypass surgery, instead of including it under the category of other surgeries.......?  Love, Pat

sorry to show my ignorance---are you SURE the EC-IC is the same---we are talking about totally different arteries here.......External Carotid/ Internal Carotid vs. Superficial TEmporal Artery (which is in the scalp itself)/Middle Cerebral Artery? I defer to your knowledge, DJ....

Carbon dioxide reactivity test measures the level of carbon dioxide in the blood vs. oxygen levels......anyone who has a lack of oxygen flow to the brain (i.e. blood flow) has, by definition,  a high level of carbon dioxide in his or her blood instead of a high level of oxygen....After the angiogram and MRI, this was a crucial test that my neurologist,  DR. Ralph Sacco at NY Presbyterian, used to determine that what I had was, in fact, moyamoya----and no doubt about it.    Love, Pat

I have had this disease a long time, and you guys know ALOT more about it than I do. I mean, the big words...

I really need to hit some of those sites and learn the big words, huh??

Anyways, thanks for teaching me stuff on this site! I love all of you guys!!

Also, I think you list looks good for the survey. Would you consider asking about race?

Sara

Dear All,

A few thoughts, though I'll try and think about it a bit longer over the next few days.

As a suppliment to question 10, what percentage of Asian extraction do you have?

a. 0%
b. 25%
c. 50%
d. 75%
e.100%

This at least traces lineage to Grandparent level.

As an addition to question 9.

For those who have had operations on both sides, was it done in one, two or more surgeries.

a. N/a
b. One
c. Two
d. More

As a new strain of thought of interest to me is the success of the surgery and the progression of the effects of the disease post surgery. Sample questions would be.

How successful was the original surgery

a. 0%
b.20%
c.40%
d.60%
e. 80%
f. >80%

I acknowledge this is a subjective measure, but its better than none.

How long since the surgery was performed

a. < 1 year
b. 1 -3 years
c. 3-5 years
d. 5-10 years
e. 10-20 years
f.  > 20 years

Since surgery have you had any relapses/deterioration relative to the initial improvements perceived post surgery?

a. Yes
b.  No

How soon post surgery did this occur?

a. < 6 months
b. 6 -12 months
c. 1-3 years
d. 3-5 years
e. 5-10 years
f. > 10 years

As a consequence of this have you had to repeat the surgery or attempted an alternate surgery?

a. Yes
b. No

Another strain of thought probably of interest to newcomers to the site who are experiencing the mad rush for information immediately after diagnosis would be.

Did you experience complications during surgery?

a. Yes
b. No

If you wanted to refine it further, you could link the feedback to this question to the type of surgery that was performed, though I guess that I would be cautious here in that we may be implying one form of surgery is as a consequence better than another when we all know that the specifics of the individula case define this rather than a sense that a risk factor may be lower in one type versus another. Similairly the likelihood of complications are clearly linked to how early the patient was diagnosed and operated on.

Do you perform a regular check-up post surgery?

a. Yes
b. No

If yes, at what frequency?

a. Quarterly
b. Semi-Annually
c. Annually
d. Every 2 years
e. Every 3- 5 years.
f. N/a

What tests are performed during the regular review.

List as in question 5.

At this point you may want to define how long you think we can afford the questionairre to be before we risk non-completion, assuming that you think some of the above add value?

I'll think some more and come back after some fo you guys have developed some of these strains and others further.

Cheers


Steve

DJ - I wanted to move this one up forward because I was reading back posts and saw the one about the survey which I know you already started..but found the following interesting...and start a new thread..see EC-IC and STA-MCA.  Thanks, CarasMOM

Hey DJ,

How about:

What Doctor performed each surgery?

What facility was the surgery performed?

I almost forgot, add burr holes to that surgery type as an addition.

Thanks

Wayne