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Diagnostic process and questions for surgeons (Read 2519 times)
DJ
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Diagnostic process and questions for surgeons
Jun 10th, 2004 at 1:46pm
 
I've had several requests for this information and wanted to make it a little easier to find.

Here would be my personal thoughts on the general diagnostic process and questions for surgeons...


General Process:

  • Initial tests (in order): transcranial doppler (ultrasound of the carotid arteries), MRI (shows any stroke), MRA (shows any problems with the carotids), angiogram (shows the road map of the arteries in the brain and THE diagnostic test that shows the actual moyamoya vessels)
  • Moyamoya diagnoses
  • Referral to a moyamoya specialist or a neurosurgeon with experience doing the STA-MCA (direct) or EDAS (in-direct) procedures
  • Interim medication: depending on the situation (stroke or hemorrhage), aspirin or blood thinners until surgery can be done
  • Additional tests: SPECT (shows the perfusion [or flow] of blood through the brain), Xenon CT (another test similar to the SPECT. Only available at a few medical facilities around the country)

Questions for surgeons:

  • How much experience with moyamoya? (i.e. how many moyamoya patients have they treated)
  • Which method of surgery is best for YOUR case (direct or in-direct), and how much experience the surgeon has with each method? (YOUR research is imperative here because there is a definite difference between the two methods and you need to have an informed idea of which method you think is best for you)
  • If my type of surgery (direct or in-direct), is not successful in increasing blood flow, can a subsequent (or different type) of surgery be performed?
  • How long until the surgery is effective in replenishing blood supply to the brain?
  • Will I be having surgeries on both sides and how long between each surgery?
  • What will the surgical recovery process be like?
  • Will I have any more strokes, TIA's, or seizures after surgery?
  • What will the follow-up process be like?
  • Will I have to take any medications after the surgery?
  • What is the long term prognosis?


Hope this helps to get the list started at least!?

-DJ
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« Last Edit: Dec 23rd, 2011 at 7:22am by DJ »  

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hillary
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Re: Diagnostic process and questions for surgeons
Reply #1 - Jun 10th, 2004 at 3:08pm
 
DJ

Awesome ideas, and lists, sums it up for me, I wish I had found this site a little sooner, It would of answered so many of my questions....

DJ, You truly are amazing!!

Hillary
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Re: Diagnostic process and questions for surgeons
Reply #2 - Jun 10th, 2004 at 3:50pm
 
DJ

This is a great idea --thank you

Janice
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DianeMain
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Re: Diagnostic process and questions for surgeons
Reply #3 - Jun 15th, 2004 at 1:01am
 
Wow, good info all in one place.  I have a question.  What is the carbon dioxide reactivity test for?  (Am I giving the correct name?)  I have heard of it but I don't know its purpose for people with moyamoya.

Diane
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Re: Diagnostic process and questions for surgeons
Reply #4 - Jun 15th, 2004 at 2:57am
 
Good question Diane, since that test isn't mentioned above.  Joni asked about a couple of tests in another thread and I did some looking.  Here was what I posted:

DJ wrote on Jun 2nd, 2004 at 2:02pm:
Joni,

To answer your question, NO, the CO2 challenge reactivity test and auto regulation test are not the same as a SPECT.  I don't know much about either of the tests, but I did some looking around and here's what I came up with:

CO2 challenge reactivity test - measures the response in the cerebral circulation supplied by the middle cerebral arteries.  I'm no expert, but it sounds like it's in the same "family" of tests as a SPECT.  Basically, it shows the blood's ability to carry oxygen to the brain as a numerical value, whereas with the SPECT, oxygen content to the brain is measured visually, with color pictures (see my SPECT pics).  Here's a link that explains the CO2 test better:  http://depts.washington.edu/uwtcdlab/co2.html

Auto regulation test - information on this one was a little harder to find, but it sounds like it's a test that measures the brain's ability to regulate the cerebral blood flow and cerebral blood pressure done in conjunction with the trans cranial doppler (TCD).  This statement would make me question whether it would be of much use in diagnosing Moyamoya "Although information is available about autoregulation in severely head injured patients, there is little or no information about autoregulation in patients with minor or moderate head injury."  Here is a link from the UW site about it:  http://www.c3.hu/~mavideg/jns/2-1-p1.html

Both of these tests may provide some good information but it seems like they would both be covered better by the SPECT.

As for the cerebral angiogram, it is THE diagnostic test for diagnosing Moyamoya.  It's the only way to actually see the "Moyamoya vessels" in the brain.  If it were my mother, I would absolutely, positively make sure they did an angiogram!  Just my Smiley

Remember, take this info for what it's worth.  I have no medical training.... just experience going through it as a patient myself.   Wink

-DJ

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Re: Diagnostic process and questions for surgeons
Reply #5 - Jun 15th, 2004 at 11:18pm
 
Hi, Nice to meet everyone in here and DJ.

The Diamox SPECT test is one of the most important study to check the cerebral vasoreactivity in Moyamoya disease. I think that CO2 challenge test may be the same methods to refer this test.

In brain SPECT we can check not only visual inspections but also the numerical datas of the brain perfusion values. Also it can be possibly done with 3D images as like DJ's pictures.

The cerebral autoregulation tests with TCD, I cannot sure the exact purpose of this one. However if somebody want to know the details, I will search it.

I am a neuroradiologist in Korea, Seoul. The importance of Korea for me is that the prevalences of the Moyamoya disease in this east asia of Korea, Japan is pretty high.

I respect DJ because now you have a mind of the scientist and also you know the clinical impact of this disease.


Take care...
Jin-Il
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Re: Diagnostic process and questions for surgeons
Reply #6 - Jun 16th, 2004 at 12:14am
 
Hi Jin-Il.  Thank you for joining us.  I'm sure you'll be asked many questions now that you are here.

Diane
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Re: Diagnostic process and questions for surgeons
Reply #7 - Jun 16th, 2004 at 2:58am
 
Thank you for your post Jin-Il.  Do you have a "standard" set of tests you use in Korea to diagnose Moyamoya?

Hope you can keep in touch with us!

;Grin

-DJ
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Re: Diagnostic process and questions for surgeons
Reply #8 - Jun 16th, 2004 at 5:15am
 
Hi Jin Il.

How exciting to have yor expertise on this board.  Welcome

Janice
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Re: Diagnostic process and questions for surgeons
Reply #9 - Jun 16th, 2004 at 6:27am
 
One diagnostic test that I have not seen mentioned here is a xenon contrast ct. I'm not at all sure of its status worldwide, but I believe it is currently not approved for wide use in the US, although it had been used previously and is pending approval (someday). If approved, we may see it mentioned more frequently here as an alternative to SPECT. Linda had received xenon scans at Stanford as one of the diagnostic tests of choice in '99 and '00.       

The cerebral blood flow information was collected in a single session as opposed to what we recently experienced with the two session (two day) SPECT. Of course, we were seriously delighted to get the results of the SPECT procedure, but Linda's descriptions of the absolute euphoria associated with the xenon test always amazed me and were slightly missed from this Stanford trip
;Grin

Jack

one excerpt:
http://www.strokecenter.org/education/ais_imaging_tech/ais-oit-spect.htm

"...Stable xenon-enhanced contrast CT, which uses the inert gas xenon to measure cerebral blood flow (CBF) in various brain regions, is an alternative to SPECT.  [Dunbabin DW, Sandercock PAG, 1991].  Stable xenon CT, whereby a patient inhales a mixture of xenon and oxygen over the period of a few minutes, allows measurement of their increased in density caused by the gas in brain tissue [Haubitz B, et al, 1993] and can be incorporated into all existing CT technologies [Yonas H, et al, 1996].  This method can be used to determine local cerebral blood flow in an area as small as 1 x 1 x 5 mm3 area, and can be repeated within 20 minutes, allowing the assessment of hemodynamic states [Yonas H, et al, 1996], including (in certain well-defined settings) the evaluation of acute stroke, occlusive vascular disease, carotid occlusion testing, vasospasm, arteriovenous malformations, and head trauma management [Johnson DW, et al 1991]."
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DJ
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Re: Diagnostic process and questions for surgeons
Reply #10 - Jun 16th, 2004 at 9:11am
 
Excellent point Jack!  It hasn't been mentioned much because it hasn't been available in the US for the last several years.

Stanford is confident they will have the Xenon CT approved and running by the end of the summer.  We're delaying my annual follow-up as long as possible so I can have the Xenon test done.

Thanks for bringing that one up!  GREAT link too!

-DJ
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Re: Diagnostic process and questions for surgeons
Reply #11 - Jun 17th, 2004 at 9:25am
 
You Guys!  I think this is an excellent thread!!  Just wanted to welcome Jin-Il to the board - glad to have you and your expertise with us! 

-Shari
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Re: Diagnostic process and questions for surgeons
Reply #12 - Jun 17th, 2004 at 6:42pm
 
Jin-Il---welcome---we can certainly use your expertise on this topic....thank you for caring...PatM Smiley
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Re: Diagnostic process and questions for surgeons
Reply #13 - Jun 17th, 2004 at 9:32pm
 
I am very glad to hear all of you here in board.

(1) JD's question. : What's the standard diagnostic procedures in Korea?

A small child comes to the hopital with complaining of periodic (or somtimes progressive) motor weaknesses especially crying or activities...etc. : This is the typical presentation of the moyamoya's disease. What we should do first In Korea? The first thing is MRI & MRA(MR angiography). The diagnostic accuracy is pretty high and it's enough that this child has this disease. The final diagnostic process in Korea is angiography(arteriogram).

Second, the prognosis of this disease depends on the status of brain perfusion. It can be measured with various methods. In Korea, the standards are Baseline/Diamox SPECT & some hospitals doing MR perfusion studies. Most neurosurgeons here in Korea more likes the results of the SPECT than perfusion MRI.

(2) Jack's comments about Xenon CT scan.

The Stanfords' have this machine, but in my knowledge in Korea we have not this CT scanner. The machine is very expensive than comparing conventional CT scanner. In 1991, development of Xenon CT scan was fantastic to us & We believed that it can do anything.... Also that era was the first generation of spiral CT scanner had developed in clinical settings (it means that the CT depicts not only anatomic abnormality but it also used to see the some functions of the body).

But, now in 2004, I think the Xenon CT is not so much helpful. Launching and approval pending by FDA in the near future is no issue to me because other alternatives are still now in upfront.

The MDCT(multislice/multidetector) scanner has 16 channels, and will come out equipped with 32/64 channels soon (it means more faster scanner enable us to give more informations). This MDCT can do the brain perfusion studies, more easily, more comfortably and also it is available in anywhere in US not as like Xenon CT scanner.

In acute stoke setting, me and some of my colleagues believes that the perfusion CT scan will be more beneficial to the patients than state of the art, MR protocols.... I also think that moyamoya patients will be of benefit by this diagnostic procedure soon.


Jin-Il Smiley
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« Last Edit: Jun 18th, 2004 at 3:56am by cji »  
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Re: Diagnostic process and questions for surgeons
Reply #14 - Jun 23rd, 2004 at 1:56am
 
DJ: This is a GREAT thread !!!!  You may have it somewhere as today is my first day reading the posts but this one thing keeps popping in my head is the importance of the aethesologist (sp) knowing that the patient may be a possible "MM" person.  Because when one is put under by a gas mask...the blood flow is further restricted in the head...and for a MM patient who already has an restricted blood flow could be further restricted.   I read that few years ago.  And when Cara was being put under...you normally get a visit from the aethesologist...I always ask...are you familiar with "moyamoya"...and I was shocked when she said "no" and wanted to know why I asked.  This was before her cerebral angiogram at the Phx Children's Hospital.  I explained to her what I said about the restricted blood flow (my husband elbowed me..."honey relax she knows what she is doing"....anyway...she said she would be right back and must have looked it up and printed it up...and said thanks for bringing it up...helped in looking at it from a different angle...a possible MM patient.   Not long before that I was on a post website for a Neurological network..for all the neurological disorders..."moyamoya" was a slow one...I was following another one "peripheral neuropathy" for my B12 disorder.....but anyway one post was from a mom whose daughter 38yrs old was having her uterus removed...during the surgery had a MAJOR stroke.  Which was totally unexpected...they did a MRI...as she was in a coma...and it showed MOYAMOYA...which they had no idea, the aethesologist asked the parents if they knew she had MM...and they didn't...a week later she died.  The mother posted "wishing she knew about it"...may have prevented the stroke had they known.

So every time Cara has had her six month MRA.  I ask that, I warn she may have MM. as they have to put her to sleep each time.

Thank you, DJ...for what you have done.  I look forward to meeting everyone..one by one.

Carol
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Re: Diagnostic process and questions for surgeons
Reply #15 - Aug 2nd, 2004 at 5:56pm
 
Hello Smiley

Thank you for your expertise, Jin-Il. I am 27, and have lived in the US since 6 months of age. I was born in Seoul, South Korea. So, anyone with information about Seoul, fascinates me. I would really like to speak with you. I was adopted from HOLT INTERNATIONAL, and since, being diagnosed with MM find it important to learn of my birth parents. Mainly, for medical history information. My mother only knows the ethnic background of my parents. My biological mother was Korean and my biological father was Caucasian.

Sorry, I don't mean to bother you, but thought you might have a new perspective on MM within Korean individuals. Thanks for your time.

Lee
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Re: Diagnostic process and questions for surgeons
Reply #16 - Aug 3rd, 2004 at 2:58am
 
Hi, Lee.

It's good to see you. I wish you are Okay even though long history of having the MM. It's not bothering me to ask me about anything about you, the MM, and other etc. if I can be helpful to that. If you want personal communications about Korean stuffs, don't hesitate to shoot me e-mail ;Grin ;Grin

I think that the medical history of your biological parents is not important now. If they had the MM, the chances to give the disease to you is not so much...and also more lower chance because of you are having half Korean blood... Roll Eyes

Take care.

Jin-Il.
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Re: Diagnostic process and questions for surgeons
Reply #17 - Sep 13th, 2004 at 10:24pm
 
When my son was diagnosed in Des Moines (Aug 27, 2004) he was sedated with Versed for the initial MRI.  My wife, a PICU nurse in the same facility, told the resident who was in charge of sedation that, because of our son's Down Syndrome and other factors, he would metabolize the medication more rapidly. 

Sure enough, 3/4 of the way through the testing, he began to awaken.  Instead of giving him a partial dose, the resident gave him another full dose of the Versed, causing him to desaturate (SPO2 dropped to mid-50's).  When my wife saw the radiologist run back to the exam room she knew what had happened.

This MRI was inconclusive; MM was suspected and a followup MRI/MRA and CT Angiogram were scheduled.  THIS TIME, his intensivist signed out of the PICU and went with him to make certain that his respiratory status was protected. 

As we shared our concerns with Dr. Scott, he stated, "the skill of the surgeon pales next to the anesthesiologist in cases like these."  We know now just how true that statement is!

In addition to asking about the experience of the surgeon, maybe we should be asking about the experience of the anesthesia team in working with MM ... as Carasmom has already done.

Smiley
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Re: Diagnostic process and questions for surgeons
Reply #18 - Sep 14th, 2004 at 12:11am
 
Amen!!!  I agree with you.  I ask the same question before the surgery on the phone, when the anesthesiologist called the night before the surgery.   He answered and it helped me handle the situation better.

Thanks

Wayne
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Re: Diagnostic process and questions for surgeons
Reply #19 - Oct 6th, 2004 at 8:21pm
 
Welcome Jin-Il, i am curious as to the prevalence of Identical twins having mm and do children of parents with mm get tested automatically?
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Re: Diagnostic process and questions for surgeons
Reply #20 - Oct 7th, 2004 at 10:25am
 
Hello Lisa and others,

I'm not certain of the prevalence of MM in children whose parents have it, but my mother has MM and I just recently requested an MRI by my primary Dr., she agreed and referred me for the test.  The test came back normal (hopefully nothing will change)!  So as I said, I couldn't find much information on heredity and MM, but I figured it was best to get tested and find out.  Luckily it seems to have turned out good for me- thank  goodness!  It certainly can't hurt to be tested is my thought.

I have another question...about the xenon CT scan, sounds like our neurosurgeon is looking to get this test for my mother at this time.  However it was mentioned it may not be available.  Is this alternative to this test widely known in the U.S.?  I think it is called MDCT test.  I am going to call and ask our surgeon about it...hoping they aren't too clueless.

Thank you everyone!
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Re: Diagnostic process and questions for surgeons
Reply #21 - Dec 10th, 2004 at 9:17pm
 
Hi, I am new because my brother in law is 45 years old and was diagnosed with MM last week-he has had 2 stokes and is in NICU at New York Presbyterian. His situation is pretty unstable and he is on IV medication to increase his blood presure/flow to his brain, hopefuly giving the stokes time to "cool down" and allow them to do surgery. Has anyone been on this type pf medication(sometimes called "triple -H" therapy)? They cannot get him off the IV and onto oral blood pressure med, so he cannot have surgery. Any info or advice people have about weaning off of this so surgery is possible would be great. Or, has anyone has thier surgeon willing to do anything(including burr surgery) while on this IV blood pressure med? I have contacted Dr Steinberg at Stanford to see if they have any experience with this particular problem. Thanks very much.

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Re: Diagnostic process and questions for surgeons
Reply #22 - Jun 11th, 2005 at 10:19pm
 
DJ,

You are a wealth of information concerning MM.  Thank you!  I just had a double bypass surgery about 15 days ago and am on the road to recovery.  The area around the incision (right side) is still "numb" and feels a little "tight."  I also feel tightness around my right eye and cheek area.  Has anyone else felt like this too?  When does the "numbness" go away?  How long does it take after surgery?  I've been given vicodin, but I'm trying my best not to take it.  Is a CT scan or MRI after surgery routine?

Aloha,
SFH Smiley
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Re: Diagnostic process and questions for surgeons
Reply #23 - Jul 13th, 2005 at 3:09pm
 
Hello All:

Reading all of your posts really makes me re-live the past few years. Our son, Brian, had a 3 centimeter bleed, out of the blue, healthy 16 yr. old. Angiography diagnosed moyamoyabut the neuros disagreed with the diagnose made by the neuro-radiologist. We believed the radiologist. We got absolutley no help from Barrows here in Phoenix, so sent all his records to Steinberg. Advanced moyamoya was his dx. Brian loved the xenon scan (the gas is fun), they did another angio and then he had 3 surgeries, STA-MCA's. He had another angio 3 months after the surgeries and has had perfusion ct's once a year since. Our local neurologist spoke with Steinberg this year and they decided that Brian would no longer need to have yearly tests. WooHoo!!!
We are so blessed...................Kathy
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Re: Diagnostic process and questions for surgeons
Reply #24 - Aug 9th, 2005 at 5:58pm
 
DJ,
This is Charlotte.  I am so glad that you put this list out there because since being diagnosed with moyamoya in 2001 I've been stabbing in the dark.

How did you get your doctor's on board to go for the transcranial doppler and the SPECT or did s/he suggest it as the first course?  In my circumstance I was diagnosed by a non moyamoya expert so it was not until recently that I knew the scope of my options.
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