I had a pretty big TIA monday morning went to my local er all they did was a ct gave me pain med and sent me home, I had a check up with my neuro wednsday and he admitted me to the hospital, they ran all kinds of test everything looked ok and they think my BP droped to low, now I am on a whole new meds for everything, I have daily headaches so I am going to a headaches specialist, just wanted to updat everyone on whats been going on, I am feel a little better but still tired and a little weak but as long as my brain can look as good as it can lol im happy

It seems that going to the emergency room does no good. I've had them send me home and then end up being admitted for a week or 2 in the hospital. I wonder why that is...It seems it is always just a plain CT they do. Does that really show anything with MMD?

Reagan

Hi,
They do the CT scan in the ER because that's what the JACHO stroke protocol requires. My understanding is that it will catch a hemoragic stroke, but probably not an ischemic stroke. It didn't show the ischemic stroke I had that set off this whole Moyamoya ordeal. You don't have to accept the CT. Tell them of your Moyamoya disease and if your history is of ischemic stroke then demand the MRI/MRA - I did. It's more expensive than the CT and requires a more skilled technician. I don't think the neurologists know quite what to make of us and our haywire brains.
I had a TIA four weeks ago. It may be that low BP was the culprit in my case too. I've since been monitoring my BP twice a day and stopped the BP medication. Seems to be up where it's supposed to be, but fluctuates a whole lot.
I'm very glad to hear you're feeling better now. Have you been in contact with Dr. Steinberg's office?
Best wishes,
Kim

yeah well my local hospital I swear thinks I am a hypocondrac ( think that's the right words one whose is sick all the time makes up being sick or wants attention) lol, even though they know I have had surgery because of the scans, and everything, they treat me like crap, anyways I have called and email dr steinberg's office but like a few people I have talked with. they never returned my emails or my calls, but I totally love my neurosurgeon and he knows MoyaMoya and has a that I know 5 other patients as of in the past 3 years I have never really asked him although i know i should, but I have personally talked with them, he has done their surgeries and are still his patient, I just got tired of waiting around for them to contact me back, and calling and emailing them I gave up on him, I figured it was a sign from God that I have the surgeon I am suppose to have :) My neurosugen and neurologist are both 90 miles away from me, whcih I have been talking to my hubsand, and we plan to move there in the next year or two, so I can get better care, we just need to save the money to move out there, because its way more expensive that way,

Sorry to hear about your TIA those things are a bummer I hope you dont have any more, thanks for suggesting to ask for a MRI/MRA I never thought about that, ( LOL its from the brain surgery lol) I took my BP when I got home and it was up there, lol, most be the stress of everyday life, I dunno, but hopefully I can get it to where its suppose to be, I hope all is well and take care
Michelle :)

Hi Michele,
Sorry, I didn't realize that you hadn't had your surgeries at Stanford. They have a huge burden there caring for their current patient load and new patients seeking help. It sounds like you have a good rapport with your neurosurgeon. I hope you'll contact him soon and let him know about your TIA. You've been through so much with the aneurysms AND moyamoya. It may be that everything is fine, but I hate thinking of you taking a risk.
Be well,
Kim

Regan  I Had my 1st Stroke in 1997 but wasn't DXed till my first surgery on New Years Eve 1998-99 and then Almost everytime I would go to the ER and put I have moyamoya the DR. Would Ask Me the Patient What Is That & What Do They Do For U  :-/
Or Some would leave the room And come back later and say OK Now I Know What It IS  (Dah)  lol  ;) They Had to Look It Up  ;Dand would always say I remember reading something about MM in Med School But Never Saw Anyone with it  :o
However That was 11 Years ago-------And they R DXing MM More often Now And it is Riduculous For Drs. To Treat U like that  >:(
Elaine

sorry Kim sometimes I tend to leave out important info lol. Ann arbor where all my specialist are, thats where I was for those 3 days! I since my stroke and everything leave out a lot of info I dunno why must be the brain damage lol, or sometimes I come off as not saying things so nice, I again dont know why, I use to never do that, BTW I finally got the okay to apply for disability, which I always kept forgetting to ask,

Elaine, I totally hate when a doctor ask me what is MM and what do they do for me, I say look it up and will know, lol, And I think personally they should read up on it, when the nurse tells them, we have it, and if they have questions I am okay with answering, I am not okay however telling them what they need to do to treat me, I am in no way a board certified doctor, lol you know what I mean, I do think more doctors should learn more about this, because as you said they are dx more and more people every year

Reagan, I am sorry thats happened to you too before, but Kim had great advice, to tell them to do a MRI/MRA because its whats needed  or even I think a CT angio, ( i like those better lol dont we all?) when do a ct, they are just looking for a bleed thats what the U of M told me, especially if your going in for a big headache, these hospital and doctors need to be re-trained, to treat us we cant treat yourselves, and if we could we wouldnt end up there lol

Maybe there is somethng we can do, to get these hosptitals where we live to do something about not knowing, maybe we could go and have like a meeting with all the docotrs and tell them and have someone who is a certified doctor go with us, so they can re learn about it, I dunno what does everyone else think?

I have been there so many times. I also like the Dr.s that tell you the MoyaMoya vessels will just get stronger in time. I want to look at them and ask them if we are talking about the same disease. I also want to ask them if they had the disease, would they accept, I had to go look up what you have on the computer. So many times I have seen that. However, when I go back...They remember me. I have a medic alert bracelet (to make my family and friends happy). I laugh because I say, the medics wouldn't know what that was or what part of my body Moyamoya would affect. My best friend carrys a paper in his car that tells about Moyamoya just in case he ever needs to describe it to anyone.

I have a new Neurologist in KC. I think I like him so far. He actually listens and doesn't pretend that he has all the answers, but he searches with the other doctors to find out. He even moves my appointments up if I am having difficulty. I don't get the "go to the emergency room" for every symptom I am experience. I don't know about you but the E.R. hasn't ever really done anything for me accept admit me into the hospital and dope me up on pain meds. I could honestly live the rest of my life without pain meds.LOL...I see my neuro tomorrow and I am excited to hear what he has to say about the symptoms I have been experiencing. Sorry I rambled on...There is a lot going on in this brain of mine.

Reagan

Hi,  I have gone thru everything all of you guys have. Was diagnosed in 2002. Have been to the ER four times since. Have been airlifted twice to the University of Iowa because they don't know what do. Had an ischemic stroke. I am glad they did because the neurosurgeons and nurologists know who I am and also know that I have heart disease and have had two aneurysms coiled and have a defibrillator because I suffered a cardic arrest in 2005. I am now in a study for five years at University of Iowa and Washington University of St.Louis. If any information I get helps all of us I will do it.  Take care, Sharon

elaine wrote on Mar 22^nd, 2009 at 2:42pm:

Regan  I Had my 1st Stroke in 1997 but wasn't DXed till my first surgery

Hey Elaine

What is a DX?

Mark (Luca's Dad)

Mark,
DX is short for diagonsed I believe.

Michele,
I am sorry to hear the ER closest to you is horrible. I would if you can request that they call your nurologest and do an MRI/MRA insted of the CT. It is so inportant to let the people treating you that you have MM and may need to explain it. I had a doctor want to prescribe me a pain killer that may constrict my vessels for a kiddney stone but sice i let them know about my MM they called my nurologest and asked if the medicen they wanted to give me was okay.
I hope you fell better.
Becky