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Message started by DJ on Jun 10th, 2004 at 1:46pm

Title: Diagnostic process and questions for surgeons
Post by DJ on 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

Title: Re: Diagnostic process and questions for surgeons
Post by hillary on 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

Title: Re: Diagnostic process and questions for surgeons
Post by janicetedd on Jun 10th, 2004 at 3:50pm
DJ

This is a great idea --thank you

Janice

Title: Re: Diagnostic process and questions for surgeons
Post by DianeMain on 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

Title: Re: Diagnostic process and questions for surgeons
Post by DJ on 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 Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register).  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=twocents.gif]

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

-DJ


Title: Re: Diagnostic process and questions for surgeons
Post by cji on 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

Title: Re: Diagnostic process and questions for surgeons
Post by DianeMain on 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

Title: Re: Diagnostic process and questions for surgeons
Post by DJ on 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!

;;D

-DJ

Title: Re: Diagnostic process and questions for surgeons
Post by janicetedd on Jun 16th, 2004 at 5:15am
Hi Jin Il.

How exciting to have yor expertise on this board.  Welcome

Janice

Title: Re: Diagnostic process and questions for surgeons
Post by Jack on 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
;;D

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]."

Title: Re: Diagnostic process and questions for surgeons
Post by DJ on 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

Title: Re: Diagnostic process and questions for surgeons
Post by STrantas on 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

Title: Re: Diagnostic process and questions for surgeons
Post by PatM on Jun 17th, 2004 at 6:42pm
Jin-Il---welcome---we can certainly use your expertise on this topic....thank you for caring...PatM :)

Title: Re: Diagnostic process and questions for surgeons
Post by cji on 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 :)

Title: Re: Diagnostic process and questions for surgeons
Post by CarasMOM on 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

Title: Re: Diagnostic process and questions for surgeons
Post by daisy on Aug 2nd, 2004 at 5:56pm
Hello †:)

† † 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

Title: Re: Diagnostic process and questions for surgeons
Post by cji on 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 ;;D ;;D

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... ::)

Take care.

Jin-Il.

Title: Re: Diagnostic process and questions for surgeons
Post by newmmdad on 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=twocents.gif]

Title: Re: Diagnostic process and questions for surgeons
Post by mpressions on 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

Title: Re: Diagnostic process and questions for surgeons
Post by lisa on 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?

Title: Re: Diagnostic process and questions for surgeons
Post by Caili on 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!

Title: Re: Diagnostic process and questions for surgeons
Post by cookie on 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.


Title: Re: Diagnostic process and questions for surgeons
Post by Shan_From_Hawaii on 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=huh.gif]

Title: Re: Diagnostic process and questions for surgeons
Post by katden on 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

Title: Re: Diagnostic process and questions for surgeons
Post by charlottek on 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.

Title: Re: Diagnostic process and questions for surgeons
Post by mattsmom on Oct 3rd, 2005 at 9:47pm
I cannot reiterate what Cara's mom said enough.  Anesthesia is a LIFElong concern for moyamoya patients.  I have this information straight from Dr. Scott himself.  

While I do not regret it, (because it put us on the road to recovery) Matthew was 7 at the time of his initial angiogram that diagnosed his MM.  However, because he was seven, he was knocked out and the anesthesia caused his second stroke.  I guess I can also say that I do not regret it because we see NO long term effects from that stroke.  We see long term effects from his first stroke and his third stroke -- but not the second.  go figure . . .

All MM patients have oxygen level concerns and blood pressure concerns.  MM patients need very stable oxygen levels during anesthesia.  They also cannot have low blood pressures.  In fact, Dr. Scott likes to slightly raise the blood pressure when performing surgery.  (Matthew's body did that by itself due to his blood pressure issues).  

Please, please, please . . . check the anesthesologist too!!!  They must be aware of MM!!!

Kim

Title: Re: Diagnostic process and questions for surgeons
Post by charlottek on Oct 21st, 2005 at 8:04pm
DJ,
Thanks for your wisdom.  I have been in telephone communication with Dr. Steinberg's office.  However, I have had the privelege to meet with Dr. Connolley's directly since I live in NJ and he practices in NYC.  The questions that you listed were exactly what I asked when I was with him.

I wanted to find out did you only go for a first opinion with Dr. Steinberg or was he further in your process?

I am really torn about which procedure to go with.  For practical reasons it seems that in-direct might be the way for me to go as far as surgery.  

Thanks for the response.


Charlotte.


Title: Re: Diagnostic process and questions for surgeons
Post by DJ on Oct 31st, 2005 at 10:18pm
Hi Charlotte,

I'm so sorry for such a late response to this thread.  You posted your question while I was in California and, for some reason, I'm just running across it now.

There has been a lot of discussion lately about which type of surgery is best.  Obviously, each MM patient and their family has to make that decision for themselves.  I don't think you will find anyone here "bashing" one type of surgery over the other, rather providing as much information about each of their personal experiences in order for people to make an informed decision about which path to take for their treatment.

Please see the thread entitled "Choosing the right type of surgery" located at: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1129765497 hopefully those posts will answer a lot of your questions.  If you still have concerns, please don't hesitate to post them here!

Hang in there and I hope this post isn't too late getting to you!

;)

DJ

Title: Re: Diagnostic process and questions for surgeons
Post by DJ on Nov 5th, 2005 at 8:43am
Again, I've updated the original post with new information...


DJ wrote on 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

[Nov 5, 2005 edit: With all of the discussions recently about the difference between the different types of surgeries, I've added the 'subsequent surgery' question to the "Questions for surgeons" area above.]

[Nov 20, 2004 edit: I've edited the order of the "General Process" area above, moving the transcranial doppler from an additional test, to the first initial test. My logic is that the transcranial doppler shows good indication of blood flow through the carotid arteries. It is also a much more cost effective test to get the diagnostic process started, rather than jumping straight to the MRI/MRA. I hope this makes sense.]


Title: Re: Diagnostic process and questions for surgeons
Post by SISTER27 on Nov 5th, 2005 at 11:30pm
Thank You DJ!!
I have just been diagnosed with MM and  Your Questions and general process is a great help to me. I can now go to the Surgeons and ask all the right things insead of being Totally clueless [smiley=huh.gif]. Knowing that you been through this is a comfort to me I can ask you and the other how they got past the fear and frustration. Your site is a godsend ;;D ;;D !



Title: Re: Diagnostic process and questions for surgeons
Post by kathy_a on Nov 27th, 2005 at 8:51pm
hHey, I have a question:      I have a torn rotor-cuff in my left shoulder, which is the same side I had the stroke on.  I also have a slap tear and a ripped bicept muscle.I am in pai 24/7 and my Dr. won't give me anything for pain.  I had 5 weeks of therapy but they don't know when it might heal.  They say that the shoulder area takes the longest to heal. I saw one orthapedic surgeon who refused to do sujrgery because I had 2 strokes during surgery.  My neurologist said that it should be fine if they watched my blood pressure and kept it stable    Has anyone out there had surgeries after the moya-moya surgery and how did everything go?

                                                 kathy a

Title: Re: Diagnostic process and questions for surgeons
Post by janicetedd on Nov 28th, 2005 at 7:27am
Hi Kathy,

MY sister Patty has mm and just had 4.5 hours of hand surgery.  Came through with flying colors.

Janice
Waterford, MI

Title: Re: Diagnostic process and questions for surgeons
Post by kathy_a on Nov 28th, 2005 at 7:25pm
Hi  Janice!
       Thanks for the reply.  Now if I can just convince the Dr.




                                                          Kathy [smiley=hug.gif]

Title: Re: Diagnostic process and questions for surgeons
Post by Debora on Jan 10th, 2006 at 5:03pm
Would you please tell me whether a person with Moya Moya can survive for several years without knowing she/he has the disease? I came across a case which fits most of the description for Moya Moya but the boy is 15 years old now and has had most of the symptons since he was 2. Could this be possible? Thanks for any help.

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Jan 11th, 2006 at 1:47am
Hi Debora,

I'm not a doctor, but from all that I've read and the many cases I've seen here.. I'd have to say, yes, it is possible. In fact, I've talked to many who have said, for them, MM has been misdiagnosed for many years. Every case is different with MMD, because of the many various factors involved with each individual. For my niece, she was 20 years old before she was diagnosed with MMD, and only God knows how long she had it before her 4 massive strokes.

If MMD symptoms are present, (such as, continuous headaches, numbness, TIA's, etc.) There are simple tests, such as an MRI/MRA that can help determine whether further neurological tests are needed. The problem is, many doctors never look for MMD, and waiting is dangerous.

I certainly pray it's not the case with the boy you mentioned, but (God forbid) if it is, thank God, there is successful treatment in most cases, with an experienced MM specialist.

Mar

Title: Re: Diagnostic process and questions for surgeons
Post by gotchlorine on Jan 11th, 2006 at 7:16am
Hi Debora,

I will add to Mar's excellent post by telling you of our personal experience.  

My daughter was 17 at the time of her MM diagnosis.  She was diagnosed at age 6 with migraines.  We just lived with the migraines until, at age 16, she had a varied order of symptoms with a migraine occurrence.  Her neurologist ordered an MRI, which indicated that she had had two small strokes.  They believe the strokes occurred either while I was pregnant with her or in early infancy.  It took another 8 months for her MM diagnosis.  While we have no absolute proof (other than the two minor strokes), we believe that Tara's MM existed years before we knew of it.  

As Mar said, unfortunately many patients have gone quite some time either undiagnosed or misdiagnosed.  The rate of progression is different with each MM patient.  Sometimes treatment is obtained before a major event (stroke or hemorrhage) happens, and very sadly, sometimes it isn't.  Our hope is that the medical profession becomes better educated about this disease and learns to rule it out, especially when stroke-like symptoms are exhibited by a pediatric patient.

Hope this helps!

Warmly,
Jill    

Title: Re: Diagnostic process and questions for surgeons
Post by Lore on Jan 11th, 2006 at 8:08am
Hi Debora,

I agree with Mar and she hit on the main point that MMD is commonly either misdiagnosed or undiagnosed or both. I am not a doctor but I can share my brother's experience  and my own thoughts on the matter with you.

My brother Kevin who is now 48 went misdiagnosed and undiagnosed for 4 years even after he had a significant stroke. In retrospect, he had signs of MMD in his thirties. He actually experienced numbness and tingling in his limbs but thought nothing of it at the time because it was not dibilitating. Then came the TIA's and blackouts. Then came the stroke which was significant in that it took his speech and abstract thinking which has improved tremendously with therapy and over time. One symptom Kevin never had was a headache or migraine.

MMD has been found in infants clear through to age 67
and possibly beyond that.

The problem is most doctors are unfamiliar with MMD and therefore, they are not looking for MMD. Unfortunately, my experience has been that MMD isn't usually found by accident or early detection. It is usually found after some extreme circumstance such as limbs being affected or migraine headaches, TIA's, seizures and stroke. If MMD was more widely recognized by doctors, perhaps some would not have to experience the extremes if they could get help earlier. It's like anything, early detection is of the utmost importance.

Actually, when I look back, I believe Kevin had signs/symptoms even earlier than in his thirties. It is very possible to have the signs and symptom for years. Kevin is probably a good example of that. So for the 15 year old to have the symptoms and signs doesn't surprise me at all.

My experience has been one can have the signs and symptoms but not necessarily to the degree that get the attention of the doctors to do certain tests and especially an invasive test like angiogram or even MRI/MRA and some, although they have the symptoms don't necessarily have them to extreme.

Even though Kevin had signs and symptoms 13 years before his stroke, even after his stroke, tests did not reveal the MM collateral vessels. Even when the collateral vessels were detected on an angiogram, the doctor had no idea what it was. So, it is different for everyone. But I have to believe that one can have the symptoms and not experience the extremes necessarily until later in life and on the other hand, there are MM folks who have had all the extreme signs and symptoms at a very young age and all at once.  Again, it is different for everyone.

In my opinion, MMD symptoms can mimic other conditions and an individual may have one or two symptoms while others have multiple symptoms. I suspect this can be very confusing both to the indivuidual experiencing the symptoms as well as the doctor trying to diagnose the problem. I do however, believe there are "common" symptoms that are a signal that it might possibly be MMD. Keep in mind, most doctors are unfamiliar with MMD and I have had doctors who have said to me they have never heard of MMD or seen MMD. Unfortunately, some of these were neurologists. More reason to bring attention to MoyaMoya disease.

I hope this helps.

Lore  

Title: Re: Diagnostic process and questions for surgeons
Post by Debora on Jan 12th, 2006 at 5:35pm
Thank you all for replying to my post. I really appreciate it. I'll forward the information and hopefully this will help the family. Thank you!

Title: Re: Diagnostic process and questions for surgeons
Post by moody on Jan 25th, 2006 at 12:14pm
Hi everyone,
2 weeks ago my doctor told me I have mm disease, they keep me 6 days in hospital for all difference test, I'm home now, and have appt. with dr @ UVA on next Monday, Im nervous, what next? can you tell me? :(
Thank you ,

Kieu (Q)

Title: Re: Diagnostic process and questions for surgeons
Post by YuYu on Feb 7th, 2006 at 6:22pm
Carol, et al,

Thanks for your post about the anesthesiologist needing to know that the person may (or does) have moyamoya.
Boston Children's Hospital has a specific protocol that they follow when anesthetising children (and adults) with moyamoya (or suspected moyamoya).  

When YuYu had has stroke and was set for his cerebral angiogram the hospital here in NM had never seen moyamoya, and even children with stroke is rare.  Thankfully my friend is a pediatric neurologist at Boston Children's and she was able to convince/educate the docs and anesthesiologists here in NM to follow their protocol - which in YuYu's case may well have saved his life!!

This piece of the proverbial puzzle is elemental in doing angiograms on moyamoya patients!!!

Thanks, and welcome to our new friend from Korea!!
Cheryl in NM - proud Mama to YuYu (4.5 years old, adopted from China last July)

Title: Re: Diagnostic process and questions for surgeons
Post by JuliesMom on Mar 21st, 2006 at 1:54pm
Hi Deborah,

My daughter had a stroke at 18 months old, went through all the standard testing, doppler, ct, mra, mri and even angiogram. We were told she had arteriosclerosis and there was nothing they could do.  Years later at age 14 she started having TIA's and after a year of going from neurosurgeons to vascular surgeons she finally ended up at Shands in Florida where for the first time last month we heard of moyamoya.  We are going to meet with Dr. Pincus tomorrow to figure out a treatment plan.  Thanks to all for the great information on this web site.  And now we know the right questions to ask.



Title: Re: Diagnostic process and questions for surgeons
Post by Islandentity on Jul 27th, 2006 at 1:24am
Hi Everyone, Thanks for a excellent website, it was recommended to us by our diagosing DR.  After 4 years of reoccuring symptoms, 5 doctors, 3 hospitals,  4 mri's 2 mra's. A EMT-B as a father( me ) our 10 year ols son has a name to put to his symptoms and that name is MOYA MOYA......I will have to tell the story some time ......
when i find the right spot  to put it.......as I borswe this site  I am learning were to find things...........HUGE Thank you to DJ

Title: Re: Diagnostic process and questions for surgeons
Post by emsmom on Oct 2nd, 2006 at 12:49pm
I posted a couple weeks ago.  My daughter is still undergoing testing to figure out why she is having stroke symptoms.  She had a MRA and a MRI, and her neurologist said she does not have moyamoya.  However, I am still not convinced.  Her symptoms are exactly what I have seen many describe as Moyamoya.  She has continued to deteriorate over the last month, and we are very scared.  Her MRI does show strokes that she had in the past, but doesn't seem to have new activity.  Yet, she continues to decline. My question is whether you can have an MRA/MRI scan that shows that the arteries look fine and still have moyamoya.  Would the scan definately show the blockage?  Has anyone else had similar problems with diagnosis?

Title: Re: Diagnostic process and questions for surgeons
Post by katjim on Oct 3rd, 2006 at 8:25am
emsmom,

I would post these same questions below with the new postings.  An angiogram would tell all.

Jim

Title: Re: Diagnostic process and questions for surgeons
Post by lotsofkids on Oct 3rd, 2006 at 9:55pm
I agree with katjim.......

insist on an angiogram!! if you insist...they will order it.
good luck

Title: Re: Diagnostic process and questions for surgeons
Post by simone on Sep 28th, 2007 at 7:36pm
;;D Hello, my name is Simone. I am 28 yrs old and I found out I had MM on 2005, I had never heard of it before but becuase of this web-site I know alot. DJ you have helped me out alot. I will be going for my surgery in a couple of weeks and I am so scared and nerves. But I just wanted to thank for all that you have done. ;;D ;;D ;;D ;;D ;;D ;;D ;;D

Simone

Title: Re: Diagnostic process and questions for surgeons
Post by missy on May 24th, 2008 at 9:07pm
My 15 year old  son is being tested for moya moya in a few weeks.
He has had siezures for about 4 years now, but looking back on it we think that these may have been mini strokes.  Can anyone tell me if they had any learing or concentration problems growing up with this disease?  
Does everyone experience seizures? and if so, did you experience seizures as a child?  

Title: Re: Diagnostic process and questions for surgeons
Post by devildragon on Sep 13th, 2008 at 5:13am
i just have a question for a surgeon i had a surgery for moya moya when i was just 3 and it was unsuccesfull i still have strokes every few years and i was wondering if having another surgery would do any good

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Sep 13th, 2008 at 8:52am
Itís hard to answer that question without knowing your specifics. It would depend on what type of surgery you had. For example, because of the way a temporal artery is utilized in the different types of surgeries, additional surgeries may or may not be possible. An experienced MM specialist would best know that answer for you after some testing. I would guess you probably had an "indirect" type of surgery at age 3, but in any case, a MM specialist just may have an alternative approach to help you, more so than most doctors because of their MM experience.  

IMO, you have no choice but to try and have another type of surgery to help provide additional blood flow, or you will continue to have strokes or God forbid worse. Please try and get to an experienced MM doctor ASAP. There are answers out there, but finding the right doctor is the key.

Mar

Title: Re: Diagnostic process and questions for surgeons
Post by lflores on Sep 25th, 2008 at 11:29pm
I have to say all this information is wonderful.   My son not only has MM but also cerbral palsy - because of this he will need a lot of surgeries down the line.  In fact, last December, (before he was officially diagnosed with MM) he had major hip surgery which took almost 4 hrs.  He was not doing to well the first day (lost blood) but I thank God we did not lose him to a stroke because of the moyamoya.  I am sure he had it at this time becuase the previous year he had an MRI / MRA done of the brain and showed some thinning of the blood vessels and carotid artery but no one knew what it was.  Although I am not happy with the dx, but sure am glad I know have information to help doctors in the future!

Thanks All and especially DJ for beginning this website.

Linda

Title: Re: Diagnostic process and questions for surgeons
Post by Tabby911 on Dec 6th, 2008 at 1:56pm
I know that MM is suppose to be rare, but my mother at age 28 was diagnosed in the mid 80's. In the late 90's two of her sister's were diagnosed as well, one being in her late 30's and the other in her mid 40's. Both of them were tested back in the 80's and came back negative. I have been tested twice with negative results. I am concerned though, seems to be adult onset in my family. I have been unable to get an answer as to whether I should be rechecked every so often. I am 35 now and right in the age zone of my aunts.

Does anyone have information for this type of incident and whether being tested every so often is a good idea in my case?

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Dec 6th, 2008 at 6:30pm
Can I ask exactly how you "got tested" just curious!
God Bless

Title: Re: Diagnostic process and questions for surgeons
Post by mlgohsman on Dec 6th, 2008 at 6:35pm
I would call a doctor who knows about moyamoya and see what they suggest, I think you should probably if it makes you feel better about knowing whats going on, ask to get a angio or ct angio. every year. thats what I would do, if family had it, and wanted to be sure i did not have it, I am going to get my kids checked, even if they have no signs, because i have it

Title: Re: Diagnostic process and questions for surgeons
Post by Tabby911 on Dec 7th, 2008 at 8:37am
First test was done when I was 15 and that was an ultrasound of the carotid arteries. The second one was an MRI about 10 years ago. I live in New Hampshire and do not believe there are many doctors in the area with much MM experience. I tried contacting one in Boston, but never received a call back.

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Dec 7th, 2008 at 4:28pm
In my personal experience, I had an untrasound of the carotid (my neck) which of course showed nothing.  That isn't where the blockage is!  I then had 3 MRI's ordered by 3 different doctors at 3 different facilities.  That aslo showed nothing but the stroke.  I was very insistent that I "just knew" there was something the Dr.'s were missing.  My doctors as well as much of my family just acted like I was a hypochondriac, withthe exception of my primary doctor, who never gave up on me!  Finally the MRA was ordered by the nuero.  His attitude was almost like if I wasn't gonna quit complaining then he would keep ordering expensive tests until I did.  When I finally had an MRA, the blockage was VERY evident (black and white to be exact).  On the MRA, one side of my brain was completely black, indicating no blood flow past the carotid.  The other side is not quite as bad, with some blood flow evident.  After INSISTING their must be a blockage on the other side too, because the TIA's are affecting both sides, the nuero ordered another MRA (I think he just didn't want to admit that he missed the blockage shown on the first MRA) and diagnosed billateral moyamoya.  Every time I went back to my nuero he had a new group of students with him.  He would ask them the same question evertime (with a smirk), "Have you ever seen moyamoya?" Then he would pull up the pictures and watch their faces with a grin.  The students would always respond the same way..."Where is it?" as they gazed at the blackness that should be my brain.  If you have been around medical professionals enough, you learn that when they say something is "quite remarkable", that is NOT a good thing.  They are saying, you have this bad! Of course I left every appointment in tears because this is the same nuero that doesn't believe in the surgery, and refuses to order an angio to fully see what is going on.  The last time I saw him, I asked him about the surgery and the angio, and he jut explained away all my concerns and desire for surgery.  He acted like I was crazy for wanting brain surgery.  All of this happened in front of a group of students.  Unfortunately, that is the next generation of nueros that will probably treat their patients the same way.  On a side note, I am actively "nuero shopping!"  LOL  
I know Stanford is conducting some genetic research, and you can probably participate, but you don't get any results from the genetic testing.  It is only for their research purposes.  I don't know if any genetic markers for moyamoya have been positively identified, or if you could get tested.  I do know the MRI's which didn't show anything were about $5,000 a piece and the MRA's were about $7,000.  For most, that is a pretty expensive "precautionary" test.  I saw somewhere on here that an angio was $45,000.  That is just insane, and anyone with "half a brain" can see that....LOL  (Unless it was a typo!)    
How unfortunate that we have all this technology for medical purposes and then deny people the benefits of it because of finances.

Title: Re: Diagnostic process and questions for surgeons
Post by franknmag on Jan 4th, 2009 at 9:31pm
I would like your opinions on something that is happening right now in my family... My brother's 5-year-old daughter was admitted into the hospital yesterday and is undergoing tests as we speak... A few days ago she complained of her left hand going numb... then the numbness gradually moved to other parts of her right side (arm, leg, eye, mouth)... later she was noticing some very slight numbing of her right arm... Also, while whe was sleeping, her parents were noticing her left leg jerking...
The doctors have done a ct scan, which turned up nothing, and are now doing a 24-hr EEG (which is in progress)... next up is an MRI...
Does any of this ring true to any of you in connection with possible MM?

Title: Re: Diagnostic process and questions for surgeons
Post by KTiller on Jan 5th, 2009 at 3:28pm
Hi,
I'm so very sorry to hear that your young niece is having troubles. The fact that her numbness is occurring on only one side of her body has probably clued her doctor's into the possibility of her having TIAs or strokes. Unfortunately the CAT scan typically will show bleeding in a brain artery (a hemorrhagic stroke), but doesn't pick up on an ischemic stroke caused by a temporary blockage in a brain artery. The MRI/MRA does a better job of showing that.

Young children with Moyamoya Disease are most likely to experience ischemic stroke as opposed to hemorrhagic stroke.

When I dashed to the local hospital after experiencing temporary periods of numbness on my left side, a CAT scan was performed which showed nothing, though an MRI/MRA, a week later, showed I'd had a couple of small strokes.

Hospitals tend to do the CAT scan first as it is quick, less expensive and doesn't require as specialized a technician to administer. The MRA also requires an injection of dye to which a small number of people have an allergic reaction. Because the CAT scan means exposure to radiation and is a less effective diagnostic tool, I personally insist on an MRI/MRA instead of a CAT scan.

I'm sure there must be many causes other than Moyamoya for what your niece is experiencing. But, if her doctors haven't yet suggested Moyamoya as a possible cause, than I think it would be a good idea to ask them to consider it.

Most doctor's have absolutely no knowledge of Moyamoya disease, so you might suggest that your brother send her MRI/MRA and any other images to Dr. Steinberg at Stanford Medical Center and Moyamoya Clinc. He'll review them and give is recommendation at no expense.

Please, tell you brother not to wait! If she does have Moyamoya Disease, than she could be at risk of a stroke, possibly a devastating one.

I pray that your niece will be fine and return to health quickly.

Kim

Title: Re: Diagnostic process and questions for surgeons
Post by suniyoo on Jan 7th, 2009 at 3:53pm
Hi Kim,

I was just recently diagnosed with MM on Dec. 22nd (that was not the gift I was expecting).  I also had numbing on my left fingers and face.  Through the MRI they discovered that I had several small spots on the right side of my brain which my dr. said were old scaring.  He then ordered additional MRI's, then the brain specht and angio which confirmed my MM.  It seems from what I've read doing various research that most cases of MM are found after someone has suffered a major stroke and therefore have surgery quickly to attempt to fix the blood flow issue.  In my case, the dr's aren't in that much of a rush it seems and it sounds like you are or were at a similar stage as I am now.  I'm wondering how long ago were you diagnosed and which procedures did the Dr's perform?  My next appt. is with another surgeon to see if I'm a candidate for angioplasty.  Was that an option for you?  I haven't come across any information where that was an option for MMer's.  If I'm not a cadidate, my dr. said then we can discuss what my options would be but he did indicate that I didn't have to do surgery right away and it was up to me to decide if I wanted to wait.  It appears that MM does not get better, just worse, so I'm not sure if waiting would be a good idea.  I am currently on Plavix and aspirin until we decide on the next steps.  Love to hear your thoughts.  Thank you for your time.

Suni

Title: Re: Diagnostic process and questions for surgeons
Post by ter on Jan 7th, 2009 at 4:55pm

   You sound very similar to my wife.  She was having similar symptoms, headaches tingling and numbness.  She never had a stroke or tia's to out knowledge.  She was diagnosed in sept 08. We were told to go on plavix and monitor it.  We read more about mm and how it is progressive and the progression rates vary from person to person.  We chose to get a second opinion from Dr. Scott in Boston in oct.  He said that the only thing to do was surgery. She was scheduled for surgery the end of dec.  She had her second surgery a week ago and is doing great.  We chose to see someone that was a mm specialist because we found that it was such a rare disease that not many neurosurgeons wanted to touch it.  In fact we are from philly and none here was performing surgeries.  Dr. Scott operated on his first mm patient in 1982.  He has a ton of experience.  I would recomend you see someone with that kind of experience.

Terry

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Jan 7th, 2009 at 7:17pm
Hi, [smiley=wave.gif] Welcome to our MM family!

Iíd like to respond to franknmagís and Suniís posts. First off, to answer frank&magís question, ďDoes any of this ring true in connection with possible MM?Ē Most definitely, without a doubt! Also, the tests youíve described thatís been done so far will not actually show MMD. The definitive test is the ďangiogramĒ. A MM experienced doctor may recognize the possibility of a MM diagnosis on an MRI, but they would then order the Angio to confirm it. The MRI shows if there were any strokes. Your brother's daughterís symptoms are identical to MM or TIAís, which is common with MM. I donít know her specifics, but her symptoms may be warnings of the lack of proper blood flow to her brain and warnings of a possible stroke. I agree with Terry 100%!! I canít emphasize enough the importance of getting an experienced MM neurosurgeon.

As you know, MM is a progressive disease, it gets worse over time. With MM, a patient is ALWAYS at risk for a stroke or hemorrhage, so prompt treatment is always very important! Delay in treatment is the particular pitfall we see every day because of the lack of experience and understanding of this disease in the medical community, and delay in treatment is dangerous and risky. With MMD, you know a stroke is coming, you just donít know when it will happen. We see all too often many doctors who lack MM experience, tell their patients they can wait for treatment or they tell them not to have surgery at this time or that the surgery is too risky, but what many new patients do NOT know is, although you may like your neurologist/neurosurgeon, and they may be very good, but we have seen in many cases that they are NOT educated enough about MM ďthe disease itselfĒ, which makes the "risk" more about their LACK of MM knowledge, rather than actual risk to the patient, and whatís important to know is, surgical management is the ONLY successful treatment for MMD, so dealing with a rare disease, experience is everything for success, IMO.

And Suni, youíre absolutely correct in your research and concerns thus far. When a doctor delays MM treatment and tells you itís up to you to decide your options, thatís exactly what I mean when I say many doctors do NOT have enough MM experience. †Why, when your symptoms are that of a stroke, would any MM experienced doctor say you could wait?? Wait for what, to have a stroke?? This disease is progressive, so I just donít get it!! †Youíre very wise in your concern about this. My advice is always to do the research. The facts are there. If you arm yourself with knowledge, they canít steer you in the wrong direction.

You also have the option of sending a copy of your films to a MM specialist to view for a second opinion. Theyíll read your films and give you their expert opinion. Unfortunately, there are only a few MM specialists out there that deal with this disease on a daily basis. Like Terry said, Dr. Scott in Boston, is one, and Dr. Steinberg in California, is †the other, but MM specialists are out there and could guide you in the right direction.

My thoughts and prayers are with you.

Mar

Title: Re: Diagnostic process and questions for surgeons
Post by hrsridermom on Jan 7th, 2009 at 8:52pm
Suni,  where do you live?  We are in Florida and I think Dr. Lewis at Shands will also look at your films and offer an opinion.  Destin had her surgery the same day you got your diagnosis!  She also did not have a stroke and we chose not to wait for one.  She only had the right side done as the left is in pretty good shape...we will just have to watch and see if the MM progresses on that side.  I would definitely consider the surgery...meds alone don't prevent the strokes.

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Jan 10th, 2009 at 6:48pm
Does anyone know for sure if this Dr. at Shands will reviews films for free?  
Thanks,
Michele

Title: Re: Diagnostic process and questions for surgeons
Post by hrsridermom on Jan 11th, 2009 at 8:45am
I can't say for sure...I think he will.  I know when I called his office to set up an appointment they got right back to me.  I got an appointment right away since we live so close so I can't remember if I sent him Destin's films or just took them with me.  Here is the number to his office.  Shana is his office assistant and she's very helpful.  I would just call and ask her.    1-352-273-9000

Title: Re: Diagnostic process and questions for surgeons
Post by KTiller on Jan 11th, 2009 at 11:29pm
Hi Suni,
I'm sorry that I didn't respond sooner to your post. I just now read it and didn't want to let another moment pass. With Moyamoya disease time is always of the essence. The "old scars" that your doctor mentioned are most likely where your brain has suffered small strokes. Those brain cells have been destroyed. It does sound like your symptoms are similar to what I experienced. Many folks, though not enough, have been able to catch this disease before they have a massive stroke. We're the lucky ones, but only if you take action now.

The neurologist who I first saw wanted to put me on plavix and aspirin and watch to see how the disease progressed. He told me I was likely to have a major stroke within three years and that he would then consider placing a stint (via angioplasty). Great, let my brain turn to mush then treat it... Needless to say after much more research and consulting with two neurosurgeons who had actual experience with Moyamoya, I learned that stinting the MCA would have caused a major stroke.
Please send your films to a Moyamoya specialist. Far, far too many neurologists have no problems making recommendations about our brain, when their own brain contains no real knowledge of this disease.

My first small stroke, tingling in fingers of left hand and left upper lip, was on July 6, 2007. MRI/MRA followed several weeks later, then diagnostic tests for blood flow, blood tests, an angiogram followed by the discussion I mentioned above with the neurologist during the first week of October, 2007 - this doctor was in no hurry. Following that discussion, I immediately sent my films to Dr. Steinberg in Stanford and had an appointment with Dr. Newell in Seattle. Had first STA/MCA by pass in Stanford on Oct 31, 2007 and second on Nov 7, 2007. My left MCA was 100% blocked and my right MCA nearly so, and other of the arteries typically affected by Moyamoya were blocked to some degree as well. Neither of these doctors who are familiar with Moyamoya recommended waiting for any period of time. I'm cognitively and physically better than before the surgeries. Other than a very slight weakness in my left hand (mostly thumb and index finger) and then only when over tired or stressed, I have no residual effects from the stroke.

You want to catch this disease before it has a chance to cause major damage. I'm not a doctor and can only speak from my own experience, but it seems to me the fact that you've already had some brain damage due to your Moyamoya would indicate that you don't have a lot of time to play with. If those smaller, collateral moyamoya vessels were doing an adequate job of getting the blood to your brain, it wouldn't now have those scars.

I know this must be scary for you, it was for me. But the good news is that your Moyamoya can be treated and you can have a long, healthy future.
Kim

Title: Re: Diagnostic process and questions for surgeons
Post by suniyoo on Jan 13th, 2009 at 7:11pm
Thank you everyone for your response and information.  It really does help to know that I'm not alone in this.  Time is definately not on my side so I want to get moving.  I spoke to Dr. Steinberg's Office yesterday and will be sending my films for his review and opinion.  I spoke to Jill in his Office and she is an angel.  Dr. Steinberg will review and give his opinion at no cost in case any one was wondering.  I do have an appt. with my neuro on the 23rd and I have a list of questions and concerns, even more so now that you've all been so helpful.  I can't tell if the tension from my head is from the stress or the MM.  Does anyone else hear a whooshing sound in there ears ?  I'm wondering if that's a MM thing?

Thanks again,

Suni
Long Beach, CA

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Jan 13th, 2009 at 10:57pm
I feel a whooshing in my neck! But no clots have ever been found there!

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Jan 14th, 2009 at 12:02pm
Hi Suni,

Iím so glad to hear youíre getting an expert opinion. Youíll find Stanford to be the best there is, IMO, and youíll confidently know the best path to take for your particular case. Itís so very wise to get a second opinion. It saves lives.


esyou wrote on Jan 13th, 2009 at 7:11pm:
†Does anyone else hear a whooshing sound in there ears ? †I'm wondering if that's a MM thing?

In regard to your question about the swooshing noise, itís been discussed here many times over the years. Here are some of the threads and posts referring to it:

Swooshing soundsMay 26th, 2005, 1:45pm
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1117128826

Heart racing in my head !!!
Mar 2nd, 2006, 1:59pm
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1141325957

continuation"THUMP NOISES"Feb 3rd, 2006, 3:21pm
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1138998083

Please keep us postedÖ

Keeping you in my thoughts and prayers.

Mar

Title: Re: Diagnostic process and questions for surgeons
Post by suniyoo on Jan 14th, 2009 at 2:43pm
Mar and Michelle, thanks so much for your feed back and Mar, thanks for the links on the swooshing.  I'm not crazy!  I would mention it to my Dr's and they looked at me like I was crazy.  

Suni
Long Beach, CA

Title: Re: Diagnostic process and questions for surgeons
Post by KTiller on Jan 17th, 2009 at 7:59pm
Hi Suni,
Me too with the whooshing. I heard it a lot at night before falling to sleep. Then, after surgery it went away. Now I hear it sometimes at night, but seldom and not nearly as loudly. When I saw Dr. Steinberg during my six-month checkup, he wondered if I was able to hear the blood whooshing through my grafts. As when he put the doppler up to them you could hear the pulse of the blood flow all the way across the room. So, I don't know, maybe the whooshing isn't neccesarily be a bad thing.
Kim

Title: Re: Diagnostic process and questions for surgeons
Post by esyou on Jan 20th, 2009 at 3:24am
Kim,

The wooshing is so loud when I'm about to go to sleep that it keeps me up.  I've had the wooshing for atleast 2 years.  That's scary considering I've probably been walking around with MM for years and didn't know it.  I hope the surgery helps although I'm not sure when that will be.  I'm meeting with my neuro on Friday.  

Take care,

Suni
Long Beach, CA

Title: Re: Diagnostic process and questions for surgeons
Post by KTiller on Jan 20th, 2009 at 6:29pm
Hi Suni,
Best of luck with your nero visit on Friday.
Kim

Title: Re: Diagnostic process and questions for surgeons
Post by dataqueen on Mar 17th, 2009 at 4:07pm
Thank you so much for this info.  I just got done talking to my sister and the doctors are due to show up any minute.  I gave her all the questions to ask and she wanted me to pass on a thank you from her.  She said she didn't even know what to ask.  We are very new to this disease and all of you have been such a help.   DJ thank you from the bottom of my heart for this web site.

Title: Re: Diagnostic process and questions for surgeons
Post by dataqueen on Mar 24th, 2009 at 10:56pm
Hello everyone,  My sister (juls 38) was told she has MoyaMoya Arthropathy and this is a rare type of MayoMayo.  Are there different questions for the type of MayoMayo?  My uderstanding is if you have this disease that surgery is the only option.  I gave my sister all the questions to ask but the doctors are telling her this is a special kind of MayoMayo.  They have her on steriods to "bring down the swelling" but no surgery talk yet.  And the doctors said its not a question of if she will have another stroke but when.  So I guess what I am asking is there something I'm missing?

Thanks so much

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Mar 25th, 2009 at 12:32am
Hi Kimberly,

Perhaps Juls doctors are waiting for her to get stable before they mention surgery at all, I don't know, but I gotta tell ya, I admit I donít know your sisters specifics, and Iím not a doctor, but common sense tells me, if any doctor on earth said ďits not a question of if she will have another stroke but whenĒ thatís says that itís serious enough to know sheís at risk for a devastating stroke or God forbid worse, and thatís what you want to avoid if at all possible, and surgery is the only hope with MM to date.

I personally never heard of a rare type of Moyamoya. I always understood that if you have MM, you already have a rare disease that is progressive and life threatening. I never heard of an even more rare or more serious type, itís urgent enough as it is, but it really doesnít matter if there is or isnít, because the facts are, without surgery, the majority of MM patients will experience mental decline and multiple strokes because of the progressive narrowing of arteries. †So youíre correct in that surgery is the only option to help avoid that from happening.

As far as the term Arthropathy that you mentioned, I always thought it was a blanket term used to refer to diseases of the joints, so how itís associated with MMD I have no idea. I donít know how much MM experience your sistersí doctors have, but IMO, I couldnít get a second opinion fast enough if I were in her shoes. It could only confirm what you know now or perhaps save her life. You have nothing to lose. We always advise a second opinion because unfortunately we see a lot of doctors in the medical community without enough MM experience and perhaps thatís whatís missing. Knowing that this is a rare disease and knowing the facts about it, I would want to be sure I was on the best path.

[smiley=twocents.gif]

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Mar 25th, 2009 at 12:49am
I have never heard of this before, so a quick google search resulted in this definition.
Arthropathy is a blanket term which is used to refer to diseases of the joints. There are a number of different forms of arthropathy with a variety of causes which require different approaches to treatment. Arthropathy can be quite painful, especially in some cases, and it usually requires treatment to inhibit further degeneration of the joint. Staying active and eating a balanced diet can help to reduce the risk of arthropathy, along with other illnesses.

The symptoms of arthropathy vary, depending on the root cause. In many cases, patients feel pain around their joints, and the joints may also feel somewhat stiff. In the case of neuropathic arthropathy, however, these symptoms are reversed, with patients experiencing a loss of sensation around the joint due to nerve damage. People with certain illnesses and over a certain age are at an increased risk of diseased joints, and their doctors will usually keep an eye on their joint health for this very reason, checking for signs of arthropathy regularly.

Another common form of arthropathy is crystal arthropathy, which involves the deposition of crystals into the joint. This form is associated with gout, a painful condition in which crystals of uric acid accumulate in certain joints of the patient. Patients with diabetes are also at risk of associated arthropathy, as are patients with irritable bowel disease.

In addition to being caused by an ongoing medical problem, arthropathy can also be the result of an infection or inflammation of the joint, or latent infection somewhere in the body. This is known as reactive arthropathy, and like all infections, it requires treatment to ensure that it does not spread. Reactive arthropathy can be caused by a malfunction of the immune system as it responds to an infection elsewhere in the body, and an arthropathy with no known cause may be a signal of an infection which requires attention.

In another form of arthropathy, facet arthropathy, back pain is caused as the facet joints of the back experience degeneration and inflammation. This condition can be extremely uncomfortable, often requiring a period of rest and the use of several medications to try to bring the inflammation and associated pain down. In extreme cases, this form of arthropathy may require surgical treatment.

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Mar 25th, 2009 at 12:59am
http://www.wisegeek.com/what-is-arthropathy.htm

I apologize for the lack of a citation in the previous post!

Title: Re: Diagnostic process and questions for surgeons
Post by Michele on Mar 25th, 2009 at 1:12am
pediatri.turkiyeklinikleri.com/download_pdf.php?id=42012 -

pg 3 discusses MM...
I'm sure you have already poured over the info available on the internet, much as we all did when first DX
God Bless you and watch over your family
Michele

Title: Re: Diagnostic process and questions for surgeons
Post by dataqueen on Mar 25th, 2009 at 2:04am
Thanks Mar and Michele,
 I have been talking with Juls all night and she finally agrees she needs a second opinion.  I am not trying to question her doctors but in the same token they are making no sense when it comes to the MayoMayo.

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Mar 25th, 2009 at 9:32am
As an added note Kimberly, I just wanted to say, there is nothing wrong with questioning your doctorsí. Itís very smart!! This is a rare disease and you are simply questioning the facts of your research and want the best for your sister. If you ask the majority of MM patients on here who have been successfully treated for MM, youíll find that every single one of them questioned their doctors at some point and had to fight to get the proper help they needed, in one way or another. The fact that youíre doing research and questioning just may save Juls life. So I say, atta girl! Keep up the good work. Weíre here to support you both on your travels and will help in any way we can.

My continued thoughts and prayers...

Title: Re: Diagnostic process and questions for surgeons
Post by dataqueen on May 3rd, 2009 at 11:35am
Hello, I'm not sure if this is the right place to ask this question but here I go.  For the last 2 - 3 weeks my sister (Juls) has been requesting her films from the hospital so we can send them to the doctor in CA for a second opinion.  The hospital refused to give them to her and told her the doctor in CA can request them.  Well he has done so and the hospital has not sent the films.  Has anyone expereinced this before and does anyone know what can we do to get them.  My brother is going to the hospital on Monday to try and get them so we can send them to the doctor in CA.  Juls is becoming weak again and we are afraid she will stroke again before we get them to the doctor in CA.

Title: Re: Diagnostic process and questions for surgeons
Post by KTiller on May 3rd, 2009 at 4:10pm
Hi,
The hospital cannot legally deny your sister copies of ALL of her medical records and scans. Because the hospital needs to protect the confidentiality of the patient, they require that the patient sign a request form. You should call and ask
them to fax it to you. Also ask for their fax number so that you can return the completed form to them via fax - it's
faster than the mail. Ask too what authorization your sister must give for you to be able to pickup the records. Tell them of the urgency of the request and of your past unsuccessful requests.

They should be able to copy the medical records and make CDs of radiological scans and have them available for you to pick up that same day or the next. You typically have to request the paper records from the Medical Records Department and the CDs of scans from the Radiological Records Department.

Don't accept any excuses for their not being able to get the records to you quickly. Ask to speak to supervisiors of the departments if you must and if necessary the Patient Advocates Office within the hospital. Be polite, but be firm! It's your sister's life that you're fighting for.

You can then FEDEX overnight the records and CDs to the doctor in California. If you have time, make copies for yourself as well. It's not a bad idea to have them on hand so that you don't have to go through this hassle a second time. Buy one of those small plastic boxes for hanging files and keep her record all in one place. This kind of organization save lots of time in an emergency. It was that kind of organization that I  had trouble with before my surgeries. I'm sure your sister would appreciate your help with that.

If you're unable to pick up her records yourself and have to rely on their being mailed out by the hospital, be sure to ask what day they will be sent then verify that they were received. If not, all the hospital again right away.
In the future be sure to request copies of all tests and records before leaving the hospital. You make the request at the Medical Records and Radiological Records departments, fill out their forms right there. Keep a copy of the request forms for yourself in case you have to follow up.

Hope this helps. I've been through this myself. Your sister is fortunate to have your help. Good Luck!
Kim

Title: Re: Diagnostic process and questions for surgeons
Post by dataqueen on May 3rd, 2009 at 8:03pm
Thank you KTiller.  She has filled out all the forms to release her medical records and films.  Never thought of getting a copy of that as well.  Excellent idea wish I would have thought of that.  We have a copy of all her writen reports and made a copy of those and  overnighted them to the doctor in CA ourselves.  He has had them for weeks now and waiting for the films.  She wants to go with tomorrow just in case they say they want her to fill out more release forms.  Not sure what I think about her going because I don't want them to get her upset.  Again thank you for the advice.  I didn't even think of going to the supervisor or Patient Advocates Office.    God Bless all of you  Kimberly

Title: Re: Diagnostic process and questions for surgeons
Post by dataqueen on May 6th, 2009 at 12:00am
I wanted to thank everyone that has replied to all of my questions and given so much support and best wishes.  Tonight is a little rough but wanted to let everyone know how my sister (Juls) is doing.  Ktiller thank you for advice about her films/cd.  The doctor in CA has received them and we have our second opinion.  She has full blockage on one side.  And please forgive me because she was a little upset when we talked on the phone and I couldn't make out if it was 25% blocked or 25% open on the other side.  I can thank you all enough for all the advice, support and understanding.  She now has a correct diagnoses and we can start to plan the next steps.  God Bless each and everyone of you.  Kimberly

Title: Re: Diagnostic process and questions for surgeons
Post by E.P.H.Lewko on Jul 21st, 2009 at 5:03am
Do you remember us?

Title: Re: Diagnostic process and questions for surgeons
Post by E.P.H.Lewko on Jul 21st, 2009 at 5:05am
Do you still remember us? We are from Poland. Our daughter -  2,5 years old Hania -is suffering from the moyamoya disease and in December our baby girl experienced two ischemic apoplectic strokes within a period of a month. Here in Poland nobady wanted to help us, but thanks to your help, sending us the e-mail adress  to many specialists in moyamoya disease and their intervention, in May our daughter was operated.
We would like to thank you from all our heart for your help with Haniaís case, for your support and your lovely letters.
We apologize that we did not notify you about the operation earlier, but we spent a very long time in the hospital with Hania. We are very grateful for your help. In Polish Child Health Center- seemingly called the best hospital in Poland Ė we had to cope with lack of understanding and little knowledge about moyamoya.
Doctors in Warsaw assured us that the operation is not necessary, that there is no chance for saving Haniaís life, and that they do not give permission for Haniaís treatment abroad.  Now we know that the best Child Health Center in Poland is just our dream.
But thanks to Dr. Scottís intervention we find wonderfull doctor in Lublin. He helped us and operated on our Hannah. We could not believe that after so many months of fighting for our daughterís life, the surgery would be finally performed in Lublin, Poland.
Owing to many kind people from our city Hania has a website www.lewko.eu where some information about moyamoya in Polish can be found.
As of today, one month after Haniaís surgery, our daughter feels much better. She does not eat through a tube any more. Unfortunately, Hania still suffers from very strong body spasticity. She does not speak or move, but we believe that hard work with a rehabilitant will bring some positive results.
We know the consequences of two strokes can be severe for her, but we hope that young children come back to their shape very fast. That is why, we-her parents- will do everything to help her become independent.
We were wondering if you could help us one more time and give us an email address of any rehabilitant that works with children with the condition similar to Haniaís.  We would need his/her professional advice and assessment of Haniaís rehabilitation that is taking place here in Poland. We just want to make sure that rehabilitation services including physical therapy are provided in the most efficient way. We want our daughter-more than anything else-to recover and enjoy life just like many other children.
Perhaps you could give us some advice  how we should rehabilitate Hania and what medicines our Hania should take? We would be very grateful for your help in this case.
Ewa, Peter, Hannah from Poland

Title: Re: Diagnostic process and questions for surgeons
Post by green on Sep 4th, 2009 at 3:57pm
My name is Vahit YeşilÁimen from Ankara, Turkey.  My daughter is 9 years old and she was diagnosed as MoyaMoya. My daughter was born at 2000 and the disease caused attacks at 2004, 2006 and lastly at 2009. These attacks occurred with headaches and crying. In the last attack numbness occurred in her left side and this numbness continued approximately 3-4 hours and then everything return to normal. After that, it was told us there were newly occurred vascular which are feeding the brain of her. I would like to learn that what will be the best option at that kind of a situation?  Is surgery needed or tracking of the patient is enough at that phase. If surgery is needed at that kind of a situation when it should be? Lastly, who should we talk about that subject and also about a surgery in Turkey.  Who do you advice us about that disease in Turkey?   

:(

Title: Re: Diagnostic process and questions for surgeons
Post by Mar on Sep 4th, 2009 at 10:06pm
Hi Vahit, Welcome to our MM family!

The newly occurred vascular which is feeding the brain that you speak of is in fact moyamoya disease. With MMD, the arteries at the base of the brain narrow and close off, so your brain does not get the proper blood, oxygen and nutrients it needs, so your brain tries to compensate and grows itís own vessels to help supply the brain with the blood it needs, but those vessels that grew are ABNORMAL vessels that are weak and fragile, and those newly occurred vessels you speak of are not equipped to deliver the volume of blood needed over a long period of time. MM is a progressive disease that only gets worse over time. Thatís why every MM patient is at risk for a stroke or hemorrhage with this disease, and surgery is the ONLY treatment to help avoid that stroke/hemorrhage.

With the symptoms youíve described, it sounds as though your daughter is having TIAís (mini strokes) they usually donít last long, but are warnings of a possible stroke/hemorrhage to come. Thatís why prompt treatment is so vital, before a stroke occurs. Unfortunately, the ONLY option with this rare disease is surgery. Surgery introduces new blood flow to the brain by either ďdirectĒ or ďindirectĒ bypasses. Itís very important that you find a doctor with MM experience. This is a rare disease, and there isnít enough MM experience out there in the medical community yet, so you have to be proactive in finding a doctor who knows this disease and has treated this disease. Thatís the key to success for your daughter, IMO.

At any phase youíre at risk for a stroke/hemorrhage. Donít get me wrong, every case is different, depending on many individual factors, but never the less, those tiny weak vessels are capable of rupturing at any phase for a number of reasons, so waiting is risky. Youíre considered very lucky if you get treatment BEFORE a stroke. Thatís the point of surgery, to help avoid a stroke. So tracking is like a ďwait and seeĒ when she will stroke. With MM, you know a stroke is coming, you just donít know when.

You are the first member that Iím aware of from Turkey, so Iím sorry to say I have no idea of a doctor there in Turkey with MM experience. But even here in the USA, any member who was treated successfully had to find a doctor who has MM experience because it is considered a rare disease.

Please seek a doctor with MM experience ASAP!! I will keep you and your daughter in my thoughts and prayers.

Please keep us posted.

Mar

Title: Re: Diagnostic process and questions for surgeons
Post by SandyR on May 5th, 2011 at 7:36pm
Hi,  I am newly diagnosed 58 year old female with MoyaMoya from my MRI.  Dr's here in Chicago suggest stents for me...Is that good?    SandyR

Title: Re: Diagnostic process and questions for surgeons
Post by gotchlorine on May 6th, 2011 at 9:45am
Hi Sandy,

Research (and clinical practice, with well over 800 moyamoya surgeries) at the Stanford Moyamoya Center suggests no. I've attached a link to an article from 2010 regarding this below.

http://neurosurgery.stanford.edu/moyamoya/Angioplasty%20and%20stenting%20.%20.%20.%20Moyamoya%20Angiopathy%202010.pdf

Jill

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