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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?
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8 comments:
Most doctors, if they have any experience with MM, will recommend an angio. If you have a diangosis of MM without a angio - then I would recommend finding another doctor. You have to weigh the risks and the benefits. Would you want your child (or you for that matter) to have brain surgery if it is NOT MM diagnosis?? Think about it!
-Concerned
I have to agree! EVERY distinguished EXPERIENCED MM expert will tell you (and you can see it on their websites)that the ONLY definitive way to be diagnosed with MM is by an angiogram. If they see it otherwise, fine, but an angio is the ONLY way to be 100% positive!!!
I really think the question is, IF you have already been diagnosed with MM via MRI/MRA, is there any reason to risk another procedure?
The posts are linking to the VERY best doctors in their fields in the world. Noone writes for the STROKE medical journal that is not the absolute best.
I do think I might have been a bit irritated with DJ when writing the post, but I cannot stand NOT having folks being able to make the choice for themself.
When I got my initial MRI/MRA results, they indicated possible MM diagnosis. However, any good neuro worth his/her salt will recommend a follow up study. MRI/MRA is not sufficient to get a full diagnosis. The angio provides more than a definitive diagnosis (gives a visual of donor veins, etc) so it is a very important procedure. Again, I will stress, any good neuro who has experience with MM will follow up with an angio. DJ doesn't mean harm. It's just that the people on the board who have been there before and want to help know what the procedure is! They are there to guide you through the process. The ultimate decision is, and always has been, the patient's (or the patient's advocate) decision. No one is forcing anything except knowledge.
I think one critical difference here is age (thus size of veins)
Angiograms for adults are not really a danger (1 in 500 or more with serious issues)
I am guessing it is the nature / smaller veins that would be the problem for smaller children?
Obviously there must be some additional risk or they would not have studied it?
Once you have diagnosed a blockage / location (MRI/MRA) and I believe the MRA even shows the "puff of smoke?" Angiogram then gives a more accurate picture of the region?
NEXT...is the decision on treatment and assuming surgery is called for, unless I am way off, that is no where near the cartoid artery area but is on the surface of the brain?
In other words, the angiogram gives a better picture of MM, BUT for surgery, they are not penetrating the brain at all, but bypassing from outside of skull to blood vessel on surface of brain on the other side of skull, correct?
My point being, how would the angiogram change anything? Assuming blockage = surgery?
If you have a child who has MM, who has experienced multiple TIAs and quite possibly a stroke(s) (with no residual deficits Praise God) then you will understand when I say that every day that passes before you can get your child to surgery is like living with a ticking time bomb. My child is at a 70% RISK for stroke without surgery. After surgery, with growth of new vessels, her risk should decrease to 3-4%. Yes, she will always have the diseased vessels, and thus MM, but she simply cannot live her life (she's 6 y/o) waiting for "THE BIG ONE" to hit. If we've already decided that surgery is the only option b/c her disease is progressing, then an arteriogram is a necessity for her surgeon to be as well informed as possible prior to surgery, which includes confirming the diagnosis previously provided with CT/angio & MRI.
As someone previously posted, the arteriogram gives the surgeon a visual of the donor arteries. The surgeon has to know where to make the incision and the arteriogram is, in the surgeon's opinion, the gold standard for this as well as for confirming prelim diagnosis.
Jenn, the 70% pre-surgery and 3-4% post surgery statistic is interesting!!
I see this is recent enough, that I would love to know if the doctor is basing this on the current blood flow / oxygen levels?
We too were told that Em was in a group / 75% chance of another stroke in 5 years.
However, the flip side, the doctor also mention there is strong new evidence that the Moyamoya growth / progression is for about 5 years!!
I found some studies on STROKE journal that supported this, they are linked here.
Really glad that the information helped and I agree, that with the odds they are telling you, that is a really easy choice!!
I hope all goes well!!
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