Hi everybody!

Louise is finally having her post-op-angio next week, more than two years after the surgery. She has been having vague symtoms now and then when overtired so it felt motivated to push for this. Her neurosurgeon has no other experience with mm than my daughter but sees Dr. Scott as an authority in this matter and since he used to recommend angio post -op she´s finally having it.
Rercently read that he stopped these post-op angios because he conciders them unnecessary (and maybe too risky??) so now I have my doubts about this angio. Please help me, your opinion is important to me!!!

When Louise was heading for surgery we really didn´t have a choise other than to go through with it but this time  maybe I´m putting her at risk for no use! If something did happen at this angio I would not be able to live with myself!

What´s you opinion about this???

Annica

Hi Annica!

I understand your concern about putting Louise through another angiogram.  My understanding of Dr. Scott's explanation is that he doesn't do them unless there seems to be problems showing up that other tests don't show.

Has Louise had an MRI or a SPECT since she's been having problems?  I would suggest one of those tests first and make sure Dr. Scott got to see the images.  If nothing was found on those to explain her symptoms, then I would agree with Len about the angio.  It is still the best way to see exactly how the bloodflow is doing.

Of course, I would also suggest Dr. Scott be kept in the process for his opinion.

Just my 

DJ

I think DJ hit the mark, if your child is doing well with the MRI results, they have no need to pursue an angio. I think the post-op angio's were mainly used to compile data. I know that sounds harsh about our children being numbers, but that is what they need to do their research.   Now, if you see some kind of problem or something doesn't seem right....definitely contact Dr. Scott or your doctor about the best way to pursue the next course of action.  As far as them being any more dangerous for post-op mm patients. I don't believe that is the case.  I think they have all the data they need to issue the surgeries successful.  I hope that helps a little.

Cotadad- I suspect if the MRI's turn out good, that they will cancel the angio.  My daughter had the surgeries on the 24th of Jan. Here is our schedule: one month see our neurologists just for a check-up.
6 months post-op--have MRI.
then yearly MRI's til Dr.Scott says we don't need them anymore or not.

question: Is Dr.Scott working with your doctors?, if not have them contact him.

I just had my 3 month post op follow up with Dr. Steinberg, and he said the follow up angio is to see the graft.  The only way to see the graft and tell if it is functioning well, and everything is all right is the angiogram.  But of course being 50, I just needed a little valium and were ready to go, a lot different then systemic anathesia for a child. 
I had the MRI Sunday afternoon, the Xenon CT Scan on Monday morning, saw Dr. Steinberg befor lunch and had the angiogram that afternoon.  Followed all that up with the Neurophyscological exam on Tuesday and home on Wednesday.  All the tests looked good, and no sign of the MoyaMoya vessels on the right side.  Still have some major problems though and will need follow up to watch for development on the right side.

Good luck with your decision, and I hope all turns out well for you.

Len

Hi Annica -

Sounds like you made a good decision and your mind is now at ease a bit.  When I went for my one year checkup Dr. Scott did give me the good news that I don't need any more followups - BUT, if I start becoming symptomatic again then he'll want to hear from me and probably do tests again.

Good luck with Louise's tests! 

-Shari