Hi all   

I just received a phone call from my neurologist regarding the results of my TCD and SPECT study....both test show normal blood flow within the brain   

He has requested that I return to Dr. Connolly with all of the new information to determine if the Cerebral Angiogram is still needed.

Based on Dr. Connolly's earlier comments on my MRI/MRA...it looks like there is a good chance that the my problem may be related to a restriction in blood vessels....and given that I have had high choleterol my entire life...there is a good chance that it might be a plaque build up.

Based on all of the above, my general doctor has changed my cholesterol medication to something much stronger...just so you guys know, a few of the new cholesterol medications are showing promise at reducing plaque build up.

So, depending on what Dr. Connolly says during my next appointment, it looks like I will be having additional MRI/MRA/CT Angios in 6 months to monitor the condition.

I am so glad that my Dr. called this morning. This way, I can enjoy my vaction a LOT more.

Have any of you had this diagnosis only to find out that it was still MM.

Have a great holiday weekend,
Greg

Greg:

I'm glad you got good news as well.  I certainly hope that prognosis is good.  I'm sure all will be fine. 

As I mentioned to you before, I have heard from this board and through my research, that the SPECT scan is not a full proof test.  Angiogram is THE definitive test to diagnose MM. 

In my case, my SPECT scan showed 'good amount' of blood flow.  However, my understanding of the SPECT compares one side to the other.  So, if have equal amounts of blood flow on both sides, you will not have a good idea of whether or not that blood flow is 'good', per se.  In addition, I had severe occlusion on both sides but the SPECT showed decent perfusion, although that was being determined by the fact that both sides of the brain looked equal.  We got this opinion from two of the neurosurgeon experts as well.  Eventually, we agreed with three of the four opinions we got that surgery was the best option to take care of the occlusions, despite decent blood flow.  In the case of my moya moya, I'm prone to stroke as long as those moya moya vessels exist, regardless of the blood flow (as was my case, since I had a hemorrage of one of those vessels prior to surgery). 

Have you had any strokes or TIAs, out of curiosity?  Or did you have headaches?  Please forgive me; I don't recall if you mentioned how you got to this point of diagnosis of MM. 

Hope this helps,
Trina

Hi Greg,

I also agree that a person with MM can have good blood flow on a SPECT. The collateral vessels around a blockage can supply the flow temporarily and may even save your life until surgery restores the proper blood flow, but it’s as Trina said, you are still prone to a stroke as long as those MM vessels exist and you do not have the surgery, because the collateral vessels are abnormal and weak and therefore can cause a stroke.

Greg-NJ1 wrote on May 27^th, 2005 at 6:24pm:

I’m not trying to frighten you, but from what you’ve just described, those are classic signs of TIA’s. Here is the description of a TIA from NINDS: http://www.ninds.nih.gov/disorders/tia/tia.htm  

We’ve learnt the hard way with MM disease, NOT to believe everything some doctors say in reference to MM, and we urge people to seek a second opinion from a MM specialist. They have more experience with this disease and they address the need to correct the proper blood flow before risking permanent damage of a stroke, where others sometimes do not and many have suffered devastating consequences because of it.

IMO, I’d get the angio, that will give you all the answers you need and help you know in what direction to go. Whether your MRI/MRA showed a stroke or not, isn't as important at this point, as doing all you can to prevent a devastating stroke in the future. That's my  

My prayers are with you.

Mar