Joni,
Yes your mom will need an angio to confirm the diagnosis. as you read on the boards you will find alot of info. Just keep fighting for your mom. MM is something very few doctors seem to know about, so if you have a tenitive diagnosis this soon then just keep pushing, because at least they know it exist. You family will be in my prayers.

Hi Joni - My advice is for your mom or dad to call her doctor right away and get the angio done as soon as possible.  Did they put her on aspirin or any other blood thinning medicine?  When my dr. got the abnormal results from my initial MRI he put me on aspirin right away.  Your dad or you may want to ask about that...in my opinion.  Good luck and keep fighting!!

-Shari

dbohot wrote on May 25^th, 2004 at 3:47pm:


db - I think that is excellent advise (in my opinion)!! 

-Shari

Thank you all for your wonderful insight and advice I really appreciate it.  Today was totally a dead end for my dad....he didn't get anywhere.  I wasn't able to get a hold of my parents before I went to work tonight but since I didn't get a phone call at work I'm praying that's good news.  My dad isn't as strong as my mom and that worries me.  That's why I feel I need to be there.  But my job and my life here are very important to me.  I can see this is going to become a very delicate juggling act.  I just wish I felt like we had some sort of plan....something in action.  They haven't started her on any meds (no aspirin) I think it's partially because she has diabetes and hypertension and the doctors don't know enough about mm to really add any new meds.  That's purely my assumption but they are telling her that the neurologists in my hometown will not be able to help her...they don't know enough, that's why she has to go to Seattle.  But my thought is why can't they start the tests (angio and whatever else they can) before she gets to Seattle.  And then just have the results sent to whom ever she is going to see there?!  I was doing fine up until this afternoon when my mother broke down and started crying on the phone.  She's scared and she told me she just wants me to come home.  It's absolutely breaking my heart that I feel so totally helpless in being able to doing anything for her right now.  But I'm just going to keep pushing my dad to stay on top of things....keep calling and I will start calling too.  I really do appreciate all the support from everyone....it's kind of nice to know I'm not going to be alone through all of this.  Thanks again.

Joni

Hi HOney---I have to agree with Lisa on this one---not all angios are created equal----personally, as a result of insufficient # of pictures taken on my very first angio at a hospital in NJ, I was misdiagnosed with cerebral vasculitis (an inflammation of the artery of the brain, and also an auto immune disorder, which caused them to put me on massive doses of prednisone and I developed steroid induced psychosis)........so, it really is best to have an experienced radiologist who knows about moyamoya, an experienced moyamoya specialist as a neurologist, and an experienced moyamoya surgeon......since your parents are in Seattle, may I make just one suggestion?  Dr. Sean D. Lavine at NY Presbyterian may be able to help you in finding an endovascular neurosurgeon and radiologist in your parent's area.  He is both assistant professor of neurology and radiology and has been key in diagnosing some of the moyamoya patients here in the tri-state area.  Tom Gallucci adores him.  He has agreed to sit on the Board of Directors of the Moyamoya Foundation......Perhaps, if you contact him, explain your Mom's situation, he can help to guide you through the web of medical professionals.....they all seem to know each other.....His e-mail address is ......will post right away again with his e-mail and phone # as I forgot it.....Pat

Joni - I agree with everyone that says to contact a Dr. that knows about moyamoya.  There are a bunch of docs listed on the site.  I used Dr. Scott in Boston - but he is a pediatric surgeon.  Dr. Steinberg in CA is the other leading specialist for MM.  They also both respond to e-mails and phone calls.  If the doctors in Seattle don't know much about MM then ask them, repspectfully, to call someone that does to consult with them.  I don't know how many of the other posts you read, but several people have commented on the importance of going to, or at the very least consulting with, a doc. that speciliazes in MM - not just someone who knows a little bit.  Keep fighting and please keep us posted! 

-Shari

Joni,

You are 100% on the right track!  All your plans- checking up on the Seattle doc, checking the insurance plan and contacting other doctors etc.- sound great to me.  Not to mention that by being able to do something, anything, for your mom (even from far away) will probably help you feel less stressed and more in the know about what is or should be happening.

I'm sure your parents are very thankful for having such a great daughter! 
Hang in there!
Lisa

Joni,
You are very welcome!    I can relate to the no sleep problem.  I don't think I slept more than 3 hours a night in the period from diagnosis to surgery. 

I was wondering, what ever led your mom to go to the ER to begin with?  I would be interested in hearing what kinds of symptoms she was having that led up to the ER visit and then the diagnosis. 

Go to sleep!
Lisa

  Well yesterday I pretty much crashed and burned.....I was so exhausted I practically fell into bed.  Today I stayed home from work in hopes of getting somewhere regarding my mom.  What an absolutely frustrating day it turned out to be!!     My mom did finally get a call from the Neuro clinic she'll be going to in Seattle.  The patient care coordinator who called her said (in a not so nice tone according to my mom) that they can no way diagnose her over the phone let alone treat her without first seeing her records and having her there.  Well that didn't sit too well with me so I called this morning.  I didn't get the woman my mom spoke with but I did get a nice fella named Nate that tried his darndest to ease my fears.  He said the 23rd of June was the absolute soonest they could get her in.....they are booking clear at the end of August right now...so June is good.  That and he told me that Dr. Becker had to have seen my mom's case to allow her to come in June.  He said "your mom had a stroke right?!  He said Dr. Becker is the #1 Neurologist in WA state and a stroke specialist.  The only problem is they never told my mom in the ER she had a stroke.....so did she or didn't she?!  I just want someone to tell us the truth!!  When I asked him if he knew if Dr. Becker had any mm patients he said he didn't know.  I called the lady my mom spoke with a second time and waited all day for a reply.  Wouldn't ya know it....when I ran out to get a movie she called me back just before she left the office.  She told me basically nothing.  Just that mom's appt is the soonest they could get her in...blah blah blah.  And she so nicely reminded me that my mom needs to utilize her primary care doctor if she has any problems in the meantime and the ER if she's really worried.  How is my mom supposed to do that when her doc won't do a darn thing?!  I'm sorry for rambling on like this but I'm just sooooo frustrated.  I feel like I make one step forward and then get knocked a couple back.  One good thing did happen today though, Teresa from Dr. Steinberg's office emailed me and told me where to send my mom's films and records so Dr. Steinberg can take a look at them.  I'm going to try to get that done BEFORE her appt in Seattle.

Please tell me this does get easier with time you guys....it's only been a week and I feel wiped out.  I guess to put it plain and simple I'm afraid.  I can't imagine my life without my mom and I'm so scared right now that I'm going to lose her.  I just want to do the right thing for her, to keep her with us for as long as possible with the best quality of life possible.  Thanks again everyone.....sorry this ended up so long.....

joni

I understand your frustration. Tyler had a Stroke in Dec 2002, a TIA in Feb 2003, and finally diagnosed in March 2003. However in order to assure he got the best care we ended up waiting till June 2003 for the surgery.

Just keep praying and asking questions, it does get better.

My prayers are with your whole family.

This sounds so familiar. My daughter was not diagnosed with having strokes until she was finally ambulanced to St. Louis.  Even there I wasn't told the severity of the stroke.  It wasn't until Dr. Scott got her films he could tell me that she had a moderate stroke in her frontal lobe.  His team was very surprised to see that she was up and around, altert, and talking and interacting.  I am very upset by the fact that I was told nothing.  Keep on em' If for somereason someone should cancel an appt. you guys should get first call.  If you keep on them you won't fall through.  I would continue to call with every change she has. 
I will be with you in thought every single day.  I remember how exhaustive this was.  Be sure to keep your rest and try to keep your cool.  I found I got a lot further if I kept myself in check.
Will be waiting for more news. Peace to you.

WOW
Sounds like your mom is stubborn, just like mine was. She was very lucky to make it home safe, and her stubborness will help in her recovery. Just keep up the battle and send your dad the info you find, it will help alot.
As far as missing classes a few weeks, if the instructors are anything like here, they will be understanding and helpful, just keep them updated and hand in your work. Attendance is important but they understand some things are more important and if you do the work they won't hold the attendance against you.
Good Luck, your family is in my prayers.
Rena