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I want to be VERY clear about this, if you Doctor has recommended surgery for Moyamoya, then I hope that you pursue this with all haste.
If your Doctor has commented or proven in other ways to NOT be familar with Moyamoya, I would hope that you will contact Dr. Steinberg or another specialist such as those at Washington University to get their opinion on your condition!
I am NOT against surgery for Moyamoya in any way, shape or form!!! It does have a good track record at increasing profusion (more blood flow) in the brain!!
Here is my ONLY real difference in opinion...
IF your Doctor has measured your blood profusion (variety of ways, SPECT, etc, Washington Univ is REALLY good at this) and the profusion is already GOOD despite your blockage. Then if the Doctor does not believe the risks of surgery are "worth" any increase in profusion...then following their plan of treatment is reasonable.
Surgery will NOT cure Moyamoya, it WILL increase profusion (blood flow) and for MANY folks they need this and they need this ASAP!!!!
But surgery (and treatment by blood thinners, etc) does not cure the disease, but is a treatment of the symptoms.
I have been told I am the advocate of "wait and see" and I can assure you I am not. I am an advocate of finding a Doctor, with comprehensive knowledge of the disease and following the course of treatment they recommend.
I am REALLY big advocate of self-education, I know more about this disease than I did six months ago!!
My only other difference from "the Party line" is they will always tell you the disease is "Progressive" Read my post below and you will see this is NOT true for all folks. (Read the statistics there for yourself)
I hope this helps anyone reading this site or Moyamoya.com in seeing what my differences are.
Monday, September 29, 2008
Friday, September 26, 2008
Followup on Angiogram procedure in children
A followup on the diagnosis of Moyamoya in children. This discuss came up recently on the Moyamoya website and my information (posted below) was deleted by the owner/admin of the site. He quite correctly points out that angiogram IS the definitive tool for diagnosing Moyamoya. My point simply is this...if your child has already been diagnosed via MRI / MRA and the Doctor has not recommended an angiogram...then I would follow your Doctor's advice on the course of treatment.
Here is a couple more links with USEFUL information to know about angiograms and children. You should note in the one study, out of 241 children, one did pass away because of a complication. My point in all of this is UN-needed medical procedures do have risk and I would not want to subject any child to that risk unless it was truly vital.
Neurologic complications of cerebral angiography in childhood moyamoya syndrome
http://www.ncbi.nlm.nih.gov/pubmed/9799310
Out of 190 angiograms performed on 152 children "Results. There were 2 neurologic complications within 24 hours of angiography, one in the MMS group and one in the non-MMS group. One patient with MMS became mute following angiography. The symptom resolved within 12 hours. One patient without MMS being examined postoperatively for residual arteriovenous malformation developed intracranial hemorrhage requiring reexploration 12 hours after the angiogram."
Safety of Cerebral Digital Subtraction Angiography in Children
http://stroke.ahajournals.org/cgi/content/abstract/37/10/2535
Out of a group of 241 children "One child with a complex dural arteriovenous fistula experienced a fatal intracranial rehemorrhage secondary to a posterior fossa varix rupture 3 hours after completion of an uneventful diagnostic angiogram."
FINAL thoughts, in BOTH of these studies they DID conclude that "The rate of immediate complications occurring during diagnostic cerebral angiography in children is very low" so please do not take this as a "highly risky" procedure.
But there IS risk, and if you have a diagnosis of Moyamoya without this, and your Doctor has NOT recommended an angiogram, WHY you would pursue this or recommend it to others?
Here is a couple more links with USEFUL information to know about angiograms and children. You should note in the one study, out of 241 children, one did pass away because of a complication. My point in all of this is UN-needed medical procedures do have risk and I would not want to subject any child to that risk unless it was truly vital.
Neurologic complications of cerebral angiography in childhood moyamoya syndrome
http://www.ncbi.nlm.nih.gov/pubmed/9799310
Out of 190 angiograms performed on 152 children "Results. There were 2 neurologic complications within 24 hours of angiography, one in the MMS group and one in the non-MMS group. One patient with MMS became mute following angiography. The symptom resolved within 12 hours. One patient without MMS being examined postoperatively for residual arteriovenous malformation developed intracranial hemorrhage requiring reexploration 12 hours after the angiogram."
Safety of Cerebral Digital Subtraction Angiography in Children
http://stroke.ahajournals.org/cgi/content/abstract/37/10/2535
Out of a group of 241 children "One child with a complex dural arteriovenous fistula experienced a fatal intracranial rehemorrhage secondary to a posterior fossa varix rupture 3 hours after completion of an uneventful diagnostic angiogram."
FINAL thoughts, in BOTH of these studies they DID conclude that "The rate of immediate complications occurring during diagnostic cerebral angiography in children is very low" so please do not take this as a "highly risky" procedure.
But there IS risk, and if you have a diagnosis of Moyamoya without this, and your Doctor has NOT recommended an angiogram, WHY you would pursue this or recommend it to others?
Thursday, September 25, 2008
Drake's type of dwarfism associated with Moyamoya
Excellent article about the link that has been found out of a VERY small population (150 folks have the Drake's Dwarfishm, and he found Moyamoya in three of them in 2008!!)
http://www.medicalnewstoday.com/articles/122192.php
http://www.medicalnewstoday.com/articles/122192.php
Diagnosis of Moyamoya - Methods
I wanted to mention this as it was discussed on the "other" board recently and the discussion was about how to diagnose Moyamoya.
In the article listed below (Sept 2008 STROKE) they addressed this VERY specifically regarding children! Basically what you want to know is this, there CAN be complications when doing angiograms with children. That makes sense, their veins are much smaller than us adults!!
They DO perform the angiograms at times, that is something you and the Doctor should be discussing, but the actual diagnosis of Moyamoya CAN be done with MRI / MRA, please read the following quote!!
http://preview.tinyurl.com/6eunot
---
"Most suggestive of moyamoya on MRI is the absence of flow voids in the ICA, MCA, and ACA coupled with abnormally prominent flow voids from basal ganglia and thalamic collateral vessels. These imaging findings are virtually diagnostic of moyamoya syndrome.138,143–147
Because of its excellent diagnostic yield and noninvasiveness, MRA has largely supplanted CA as the primary diagnostic imaging modality for moyamoya syndrome.143,148–153
However, although MRA affords the ability to detect stenosis of major intracranial vessels and to visualize the basal collateral vessels, MRA is less reliable when applied to smaller vessel occlusions. In a study of 190 angiograms from pediatric patients, the complication rate from angiography in children with moyamoya syndrome was no higher than the risk of angiography in nonmoyamoya populations with other forms of cerebrovascular disease."
In the article listed below (Sept 2008 STROKE) they addressed this VERY specifically regarding children! Basically what you want to know is this, there CAN be complications when doing angiograms with children. That makes sense, their veins are much smaller than us adults!!
They DO perform the angiograms at times, that is something you and the Doctor should be discussing, but the actual diagnosis of Moyamoya CAN be done with MRI / MRA, please read the following quote!!
http://preview.tinyurl.com/6eunot
---
"Most suggestive of moyamoya on MRI is the absence of flow voids in the ICA, MCA, and ACA coupled with abnormally prominent flow voids from basal ganglia and thalamic collateral vessels. These imaging findings are virtually diagnostic of moyamoya syndrome.138,143–147
Because of its excellent diagnostic yield and noninvasiveness, MRA has largely supplanted CA as the primary diagnostic imaging modality for moyamoya syndrome.143,148–153
However, although MRA affords the ability to detect stenosis of major intracranial vessels and to visualize the basal collateral vessels, MRA is less reliable when applied to smaller vessel occlusions. In a study of 190 angiograms from pediatric patients, the complication rate from angiography in children with moyamoya syndrome was no higher than the risk of angiography in nonmoyamoya populations with other forms of cerebrovascular disease."
Thursday, September 4, 2008
Latest articles in AHA!!
Something I personally plan on doing is reading everything I can about the disease and the best place is the American Health Association. This is the SAME place that many of our Doctors goto to read the latest findings.
The language can be difficult (written FOR Doctors) but you can often read enough to understand the analysis and conclusions!
Management of Stroke in Infants and Children
Purpose— The purpose of this statement is to review the literature on childhood stroke and to provide recommendations for optimal diagnosis and treatment. This statement is intended for physicians who are responsible for diagnosing and treating infants, children, and adolescents with cerebrovascular disease. [Excellent info about how they are diagnosing and treating children with strokes!]
http://preview.tinyurl.com/6eunot
The language can be difficult (written FOR Doctors) but you can often read enough to understand the analysis and conclusions!
Management of Stroke in Infants and Children
Purpose— The purpose of this statement is to review the literature on childhood stroke and to provide recommendations for optimal diagnosis and treatment. This statement is intended for physicians who are responsible for diagnosing and treating infants, children, and adolescents with cerebrovascular disease. [Excellent info about how they are diagnosing and treating children with strokes!]
http://preview.tinyurl.com/6eunot
Hope all are doing well!
I saw a couple articles come thru Google news during August and thought I would share them. All is well on our end, Emmie is still recovering function in her arm and leg, keep her in your prayers.
http://www.pjstar.com/news/x627091444/Causes-for-Concern
http://www.pjstar.com/features/x1033420827/Teen-shows-his-gigantic-heart
http://www.pjstar.com/news/x627091444/Causes-for-Concern
http://www.pjstar.com/features/x1033420827/Teen-shows-his-gigantic-heart
Tuesday, August 5, 2008
Welcome to our new contributors!!
As you can see we have a growing list of contributors here and I want to encourage each of them to use the site and blog as they wish!!
If you are interested in becoming a contributor please contact us via the comments area, we DO read those and will respond to questions, etc.
This is a bit different from a forum enviornment, but basically a BLOG posting is like starting a new topic and then the COMMENTS area is where we can respond to each others posts!! [Keep an eye out for comments area!]
Welcome one and all, S & E
Tuesday, July 29, 2008
Is Moyamoya really progressive??
Something you will often read in the forums or on wikipedia, etc is that Moyamoya is a progressive disease.
Here is a study that was published in 2005 in Stroke journal that studies the actual rate of progression.
http://tinyurl.com/5wjuv5
They started with 120 patients that had been diagnosed with moyamoya disease over a 14 year period, 1990 to 2004. They wanted to study only the sides of the brain that did not have the bypass operation and so they found 23 patients with NO operations (46 sides) and 40 patients with a bypass operation on one side, they studied the other.
This created a pool of 86 sides all told and 15 of the 86 sides had progression. That actually occurred in 15 of 63 patients.
8 of the 23 patients with no operations and 7 of the 40 with operations on the other side.
You will see that of the 15, 13 were WOMEN, so ladies are at a much higher risk for getting Moyamoya and for its progression.
To those who are considering your options, I think this is pretty good information to have!
Let me point out something else that validates the "2 year cycle" mentioned below. The folks that had bilateral Moyamoya (on both sides of brain), the interval between onset (first symptom) and progression was 28 months on avg. See the quote below.
"The interval between their onset and disease progression was 28.4±26.3 months, ranging from 1 month to 8 years, and was significantly shorter in patients with bilateral moyamoya disease than in those with unilateral moyamoya disease."
The folks that originally were diagnosed with Moyamoya on one side, progressed to the other side in 4 of 11 patients. That occurred over a 36 month period on average.
"The interval between their onset and disease progression varied from 1.5 to 8 years (60.0±36.3 months). All of the patients were women."
Here is a study that was published in 2005 in Stroke journal that studies the actual rate of progression.
http://tinyurl.com/5wjuv5
They started with 120 patients that had been diagnosed with moyamoya disease over a 14 year period, 1990 to 2004. They wanted to study only the sides of the brain that did not have the bypass operation and so they found 23 patients with NO operations (46 sides) and 40 patients with a bypass operation on one side, they studied the other.
This created a pool of 86 sides all told and 15 of the 86 sides had progression. That actually occurred in 15 of 63 patients.
8 of the 23 patients with no operations and 7 of the 40 with operations on the other side.
You will see that of the 15, 13 were WOMEN, so ladies are at a much higher risk for getting Moyamoya and for its progression.
To those who are considering your options, I think this is pretty good information to have!
Let me point out something else that validates the "2 year cycle" mentioned below. The folks that had bilateral Moyamoya (on both sides of brain), the interval between onset (first symptom) and progression was 28 months on avg. See the quote below.
"The interval between their onset and disease progression was 28.4±26.3 months, ranging from 1 month to 8 years, and was significantly shorter in patients with bilateral moyamoya disease than in those with unilateral moyamoya disease."
The folks that originally were diagnosed with Moyamoya on one side, progressed to the other side in 4 of 11 patients. That occurred over a 36 month period on average.
"The interval between their onset and disease progression varied from 1.5 to 8 years (60.0±36.3 months). All of the patients were women."
Monday, July 28, 2008
Links!!
http://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm
http://neuro.wustl.edu/patientcare/clinicalservices/moyamoyacenter.htm
Want to participate in the Moyamoya study, see below!
http://clinicaltrials.gov/ct2/show/NCT00629915?term=Moyamoya+Disease&rank=1
http://en.wikipedia.org/wiki/Moyamoya_disease
Boston's Childrens hospital Moyamoya site!! Excellent FAQ
http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P0.html
Dr Steinberg, reputed to be an excellent surgeon for MMD!!
http://www.stanfordhospital.com/clinicsmedservices/coe/neuro/moyamoyadisease/default
Using Plavix treatment for kids with stroke (Moyamoya mentioned)
http://tinyurl.com/5h68eo
http://neuro.wustl.edu/patientcare/clinicalservices/moyamoyacenter.htm
Want to participate in the Moyamoya study, see below!
http://clinicaltrials.gov/ct2/show/NCT00629915?term=Moyamoya+Disease&rank=1
http://en.wikipedia.org/wiki/Moyamoya_disease
Boston's Childrens hospital Moyamoya site!! Excellent FAQ
http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P0.html
Dr Steinberg, reputed to be an excellent surgeon for MMD!!
http://www.stanfordhospital.com/clinicsmedservices/coe/neuro/moyamoyadisease/default
Using Plavix treatment for kids with stroke (Moyamoya mentioned)
http://tinyurl.com/5h68eo
Moyamoya Two year cycle!!
One of the more interesting findings in this study is this fact:
"The duration from first symptomatic event to last symptomatic event (TIA or stroke) with medical treatment is shown in Figure 2A. Most subsequent events occurred in the first 2 years after presentation and 1 after six years."
This is what our doctor told us when we were first finding out about the disease and what our options were. (Surgery, treating with medicine, etc)
Of course you do not know where you are in that 2 year cycle, and that is one of the more scary parts.
Based on the rest of this study and the fact that those treated with medicine have a similar risk for another stroke as those operated on, we have chosen to not have surgery for now. If there is another stroke, we will reconsider it at that point.
Surgery does not "fix" moyamoya (25% DO see a reduction in MM vessels though!), but essentially creates another avenue for blood to get to your brain.
One of the most important things to know is how well your brain is profused (getting blood now) and there is some tests they can do to help you find this out. If it is not getting an adequate supply of blood, I believe surgery is the ONLY option to increase blood flow!
I hope this information is helping, please send me comments so we know the word is getting out there!
"The duration from first symptomatic event to last symptomatic event (TIA or stroke) with medical treatment is shown in Figure 2A. Most subsequent events occurred in the first 2 years after presentation and 1 after six years."
This is what our doctor told us when we were first finding out about the disease and what our options were. (Surgery, treating with medicine, etc)
Of course you do not know where you are in that 2 year cycle, and that is one of the more scary parts.
Based on the rest of this study and the fact that those treated with medicine have a similar risk for another stroke as those operated on, we have chosen to not have surgery for now. If there is another stroke, we will reconsider it at that point.
Surgery does not "fix" moyamoya (25% DO see a reduction in MM vessels though!), but essentially creates another avenue for blood to get to your brain.
One of the most important things to know is how well your brain is profused (getting blood now) and there is some tests they can do to help you find this out. If it is not getting an adequate supply of blood, I believe surgery is the ONLY option to increase blood flow!
I hope this information is helping, please send me comments so we know the word is getting out there!
Latest studies on treatment of Moyamoya!!
I wanted to put a couple of quotes and links to Stroke Journal - a study that was published, it took place from 1996-2005. This should allow folks reading the thread to see the same thing the neurosurgeons are reading.
I would suggest anyone wanting to know more about Moyamoya search for that term on the Stroke website, you can read every published article there. http://stroke.ahajournals.org/
The data from this study and a previous one in Japan in 1996 show that folks with the bypass surgery are still at risk for stroke, with 14-17% of the group having them within 5 years.
For those who treated medically, and were corrected diagnosed via angiogram, during the same 5 year period had a stroke rate of 27%. http://tinyurl.com/5swcja [Published June 2006]
"In medically treated symptomatic hemispheres, the 5-year risk of recurrent ipsilateral stroke was 65% after the initial symptom and 27% after angiographic diagnosis."
"In surgically treated hemispheres, the 5-year risk of perioperative or subsequent ipsilateral stroke or death was 17%. This was significantly different compared with medical treatment after first symptom (P=0.02) but not after angiographic diagnosis. "
One benefit of surgery, is that 25% of patients will see a decrease in moyamoya vessels!!
"Moyamoya vessels, which are supposed to be responsible for hemorrhage, decreased in 25% of patients." http://tinyurl.com/6oujm5 [1996 study in Japan]
http://tinyurl.com/5e25d3 May 2007 study... 6 of 40 treated by surgery, 34 of 40 treated medicinally. 7 of 34 medically treated had event within follow pd, 20.5% Of the 6 treated with surgery, no events within follow up pd.
I would suggest anyone wanting to know more about Moyamoya search for that term on the Stroke website, you can read every published article there. http://stroke.ahajournals.org/
The data from this study and a previous one in Japan in 1996 show that folks with the bypass surgery are still at risk for stroke, with 14-17% of the group having them within 5 years.
For those who treated medically, and were corrected diagnosed via angiogram, during the same 5 year period had a stroke rate of 27%. http://tinyurl.com/5swcja [Published June 2006]
"In medically treated symptomatic hemispheres, the 5-year risk of recurrent ipsilateral stroke was 65% after the initial symptom and 27% after angiographic diagnosis."
"In surgically treated hemispheres, the 5-year risk of perioperative or subsequent ipsilateral stroke or death was 17%. This was significantly different compared with medical treatment after first symptom (P=0.02) but not after angiographic diagnosis. "
One benefit of surgery, is that 25% of patients will see a decrease in moyamoya vessels!!
"Moyamoya vessels, which are supposed to be responsible for hemorrhage, decreased in 25% of patients." http://tinyurl.com/6oujm5 [1996 study in Japan]
http://tinyurl.com/5e25d3 May 2007 study... 6 of 40 treated by surgery, 34 of 40 treated medicinally. 7 of 34 medically treated had event within follow pd, 20.5% Of the 6 treated with surgery, no events within follow up pd.
Information for folks with MoyaMoya
There are a few sites that are dedicated to the Moyamoya disease and I wanted to offer some alternative information that is not being encouraged in those locations.
http://www.moyamoya.com This is the site with the most information and a very active discussion forum but a fair warning to anyone interested in participating at that site. If you are not having immediate surgery you will be chastised and told you are crazy or don't love your family member with the moyamoya syndrome.
I hope to create an alternative site with full access for all members to write their own articles, publish them and participate in a more open atmosphere, free from personal attacks.
This is NOT to say that surgery is not a GOOD and VIABLE option for everyone with MMD (Moyamoya Disease) but that is not the ONLY option.
I will provide links to the absolutely latest studies which show the up to date figures about this disease, how folks are being treated and what their results are!! I believe that you should be able to make an INFORMED decision and I wish you the very best on your journey!
http://www.moyamoya.com This is the site with the most information and a very active discussion forum but a fair warning to anyone interested in participating at that site. If you are not having immediate surgery you will be chastised and told you are crazy or don't love your family member with the moyamoya syndrome.
I hope to create an alternative site with full access for all members to write their own articles, publish them and participate in a more open atmosphere, free from personal attacks.
This is NOT to say that surgery is not a GOOD and VIABLE option for everyone with MMD (Moyamoya Disease) but that is not the ONLY option.
I will provide links to the absolutely latest studies which show the up to date figures about this disease, how folks are being treated and what their results are!! I believe that you should be able to make an INFORMED decision and I wish you the very best on your journey!
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