Monday, September 29, 2008

Treatment of Moyamoya

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.

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?

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

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."

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

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