Help please.

I am a very frustrated mother at the moment. How do other people with moyamoya get local hospitals and their staff to understand moyamoya and it's issues?

My daughter has unilateral moyamoya (sta-mca bypass 2009) and is 35 weeks pregnant with second child.

She has been taken to our local emergency department twice in last 6 weeks. Both times with headache, tingling in face, loss of movement and altered sensation in arm and leg and speech problems - words coming out wrong, couldn't find words and the first time she lost total speech for days. First time she was admitted for 3 days and had an MRI. This time discharged from emergency after 14 hours, no MRI and given paracetamol, morphine, endone and another drug which knocked her out. How do you know if her conditon is changing when she is unconcious and drugged?

Both times (same hospital) - what is moyamoya? Fair enough question but she has been admitted there more than a dozen times. Isn't it on her file? When we try to explain they treat us with total contempt. Wouldn't contact her specialists (neurologist and obstetrician), ignored requests for hydration and didn't do regular observations.

How do other people get hospitals and their staff to listen?

We have a letter from her specialist but it still doesn't seem to matter.

I only want the best for my daughter and unborn child.

This will not help you, but where moyamoya (or anything else, for that matter) is concerned, you have to educate yourself and be  your own advocate.  My husband had a stroke less than 30 days after his EDAS.  The ER people of course had no idea what moyamoya was either, but the neurologist did.  They didn't give him hydration either until the second day.  Problem is, he went into status epilepticus and they let him have seizures for 36 hours before they intubated and sedated him.  By the time I got him out of there and into a hospital where they knew what they were doing, he was pretty much gone and never regained consciousness.  I am going to file a complaint with my state's hospital licensing board.

My suggestion, and who knows if it will do any good, is to do the following:

1)  Print out as much stuff as you can from legitimate scientific sources about moyamoya.  Make sure that when your daughter goes to hospital, she has it with her.  If she goes to the same hospital frequently, ask to have it put into some kind of permanent record.

2)  Tell them that she had a stroke and that he has moyamoya.

3)  WATCH FOR SEIZURES!!  If she has seizures, they MUST first administer anti-seizure meds and if they do not knock down the seizures within 30 minutes, they MUST intubate/sedate.  Do NOT let them tell you they are focal seizures and she is fine.  The neuro on call at my local hospital tried to tell me that until I made her go up and actually check on him after 36 hours of seizing and his neurosurgeon in NYC horrified at what they were doing. 

What they gave your daughter is a whole cocktail of painkillers. Why they gave her painkillers for a stroke is a mystery.

You are going to have to be her advocate, because obviously your hospital is regarding her as a "hysterical pregnant woman".  It is reprehensible.

Thanks for your suggestions.

We are in Australia and things may be different here but, there is only have one hospital in our city with an emergency department so there is no choice and the ambulance will not bypass this hospital. The hospital she had her surgery at is over an hour away. We have supplied many documents to this hospital including a letter from Dr Steinberg but the head neurologist at this hospital has stated that she doesn't have moyamoya because it is only on one side..... and unfortunately his word carries more credibility.

Her neurologist has written an action plan to give to all her current treating doctors and they are to contact him directly if they have any questions. His action plan requires us to contact him directly if she has any further episodes and then he will decide on what to do next. Hopefully there won't be any more issues but better to be prepared.

OneStoneTwoBirds I hope you get some answers. My deepest sympathy for your loss.