Hi Opal,
Thank you for the update. It's so good to hear your hubby is recovering so well from his stroke. You both have been in our thoughts and prayers.
If you don't mind, I have a few questions though. You mentioned that you have a new neurologist, and that he said,
“The MRI shows his moyamoya as clinically insignificant”.
I know nothing about your husbands case, don't get me wrong, but my concern is, the way I understand it… mm is generally a progressive disease (and he was diagnosed 17 years ago?) Also, an
angiogram is the only way to actually see the MM vessels. Did your hubby have an angio recently? Does your new doctor have MM experience? The reason I ask you these questions is… We too consulted some very well known neuro’s, in fact they were leaders of the neurological department at a teaching University, but they had little experience with MM. That’s disastrous for a mm patient. I’m not a medical professional mind you, but from what I’ve learnt so far, an MRI is a great diagnostic test and it shows if you had any strokes. An MRA shows any problems with the carotids, but you didn’t mention
“Angiogram”, and that’s what concerns me, because from what I’ve learnt the past couple years is, an experienced
MM neuro would need a angiogram if they suspect there is an abnormal blood flow in one or more of your vessels. You also stated in your first post that your hubby’s carotid arteries are almost completely sealed off, but he was getting an ample blood supply from the vertebral arteries. The carotid arteries are the main blood supply to the brain. Well, that too has me baffled, because how does this doctor know the blood supply to the brain without other tests, or didn't you mention his other tests in your post?? If your hubby does in fact have MM, the MM vessles can be fragile and weak and bleed, so my concern is that of another stroke or bleed.
Also, I don’t know your hubby’s history or reason he was taking Tegretol, but if he had seizures in the past, we’ve also learnt that with MM and the TIA's associated with it, can also cause seizures. Unfortunately the General medical community doesn’t know enough about this rare disease, and my only concern is that you get the best possible care in treating MM the disease. I mean nothing bad against any doctor.
Lastly, if you don’t mind, I’d like to comment on a statement from your first post,
“I'm not in a position to question his neuro without hubby's knowledge.”
Well, IMO, for what it's worth, (with this disease,) a MM patient MUST have someone else be their voice!! Distressingly, with MM they may not be able to speak with the knowledge they need to make the vital decisions involved. I say this with only love and concern in my heart from having experienced it.
I’m sorry for the lengthy post, but I had so many concerns and hope I addresses them appropriately.
Please know you, your hubby and your daughter are in our continued thoughts and prayers.
Mar
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