Hello,    
       This is still new to me. I had surgery on my right side in May 2006. I am doing ok. I still get headaches and the paralysis. I was recently told that I still have a low blood flow on the right side and that it is a variant of Moyamoya. Lucky me! I am not sure how to take this news. Please help me to understand.

Lara

Hi Lara,

I understand why you are scared. I believe you need more information from your doctor regarding your symptoms and condition.

I think if you get a better explanation from your doctor about your current symptoms and condition, you will have a better understanding of both.

It concerns me that you have paralysis.  Have you always had paralysis or is it something new? Does it come and go? What has your doctor said about the paralysis?

Are you having TIA's?

What does low blood flow mean?  How low?  What is the percent of blood flow?

What is a variant of Moyamoya?

Please ask your doctor to clarify your symptoms and condition and what your next steps are.

Have you had any recent tests like an MRI or angiogram or are these tests scheduled in the near future?

Lore  

Hi Lara,

I remember answering your similar post a few months ago. I suggested that you get another opinion because it may have progressed to the other side or perhaps the first surgery wasn’t as successful as we’d hoped for improved blood flow, but you said you were confident in your doctors’ decision. Well, in all good conscience I have to say again, perhaps you’ll feel better in getting another opinion, just to be sure, and then if your doctors opinion is backed up, you won’t be as scared, but by doing nothing, you may be at risk for another stroke.

Last time you posted, I believe you said you only had CT scan and a doppler, but I agree with Lore, you need additional tests for any definitive answers, which would definately be an angio.

Good luck!

Mar

I agree wholeheartedly. An MRI is an excellent diagnostic tool, and second opinions are an absolute neccesity. My first neurologist, who diagnosed me, was great and all but completely not prepared for a patient like me.

Aloha Lara,

Don't worry, you're not alone...being scared is human nature and a normal reaction...  As for how to "take this news"...I agree with Lore that once you're able to ask your medical team more in-depth questions regarding this "variant" of MM, then maybe you'll have a better understanding of what you're facing.  The one thing that came to my mind after reading your posting was the same thing Lore suggested asking your physician...


Quote:

"It concerns me that you have paralysis.  Have you always had paralysis or is it something new? Does it come and go? What has your doctor said about the paralysis?"

 and..are your symptoms on both sides?  [smiley=huh.gif]

I do know of another previously diagnosed MM patient that had 3 surgeries, and now her medical team has advised her that she may not have MM after all...so you are the second person that I've heard something of this nature.  Hmmm.... [smiley=huh.gif]

Nonetheless, I cannot express enough how obtaining additional medical opinions literally saved my life.  ;)  Again, all you pay for is the postage (or imaging fees if your hospital charges you).  You can send your films (CT, MRI/MRA, Angiogram, etc) to other MM experts to merely obtain their opinions and go from there... It can only provide you more information from their professional perspective.  ;;D

I hope you're able to find comfort in our replies to your posting~and more importantly, find out more information regarding your specific circumstance by speaking with your medical team that's providing your care.

Take care,
Shan

Thank you all. I do feel better after hearing from you. I am trying to schedule another appt. with my neurologist. I will ask all of these questions as well.

Since the stroke I have and still continue to get paralysis. This is normal for me. Episodes are getting longer and the paralysis seems to be getting worse. I am losing more feeling. My other side is fine so they tell me.

They tell me that they are not TIA's. If not then what the heck are they??

I will keep in touch and thank you again.

Lara :-/

Hi Lara,

I hope you are able to get an appt with your neuro soon--and also seriously consider obtaining other opinions (even if not in your area).  ;)

In all honesty, hearing about your paralysis worries me--especially if they are getting worse!  As for asking what they could be since "they" are telling you they aren't TIA's...well, I'm not sure anybody can answer that just from the information you have thus provided.

May I ask what tests you have had since your surgery?
Quote:

"Have you had any recent tests like an MRI or angiogram or are these tests scheduled in the near future?" ~ Lore

These tests should help give your neurosurgeon and your medical team a better idea of how successful your procedure was and where you go from there...  Again, not to beat a dead horse....  ;) I would recommend sending any films to other medical experts familiar with this disease for their opinion.  It truly can't hurt--and may give you a different perspective/insight and options related to your specific condition.

I would rather you do it sooner than later since you mentioned that your [quote]"Episodes are getting longer and the paralysis seems to be getting worse."  :-[/quote]  Please don't wait...   :-/ 

Hang in there!

Take care,
Shan