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Good morning everyone!!     I'm am here trying to find some answers.  My mother was seen in an ER this past Friday and was told they "think" she has Moyamoya.  They sent her  home told her to call her doctor the next day and they would let her know more info and give her a referral for a neurologist in Seattle.  My parents live in eastern WA state and I live in WV.  To make a long story short my dad is totally getting the run around from everyone!!  This doesn't seem like a priority to any single person in her doctor's office.  Today is Tuesday and the symptons she presented with in the ER last Friday do not seem to be improving much to me.  And starting yesterday she is having problems with her bladder....she really isn't getting the sensation when she needs to urinate.  To put things plain and simple I am scared to death.  I am a 30 year old woman who is NOT prepared to lose her 48 year old mother!!  If my dad doesn't start getting answers soon the doctors are not going to like this daughter!!  I'm an LPN who is finishing up my RN but this Moyamoya stuff has me really at a loss.  I'm trying to read everything I can about it because they told my parents nothing in the ER she was in.  I know they did an MRI and MRA but shouldn't they be doing other tests?!  What about an arteriogram or cerebral angiogram?!  My biggest fear right now is that she is going to stroke out and be left with permanent damage.  I would appreciate any information anyone has to offer.  So far I think I'm going to fly back home to WA state to go the Neurologist with my parents.  I'm just not quite sure when that will be.  I thank you all for your support and I'm soooooo happy I found this site!!  

Joni in WV  

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.

Joni-
I had to have a angio done in order to be diagnosed with MM. From what i learned is that it is the only positive test to show MM. It is very upsetting to deal with doctors who seem to not care but most of them just have no clue how to help you. I have dealt with many of them and you just cant take no for an answer. I hope everything works out for you and your mom!

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

Joni,

Yours sounds alot like my situation.  I am in Texas and my parents are in Philadelphia (my dad is in ICU after having numerous strokes).  We got a tentative diagnosis of MM a couple months ago and now we have a doctor that uses every synonym possible without calling it MM and is impossible to get an answer from...if you can even talk to him.  We are currently working with another dr to get a second opinion and to find someone that won't talk around the subject.  

My advice:  there is a long road ahead and there are going to be so many times you want to just jump on a plane to be there either for support, just to see your mom, or to yell at some nurse/doctor untill they tell you something or do something.  Wait some of these times out...you can't run yourself into debt and cause trouble with your work too.  My company has been really great about me disappearing in the middle of the day because I am too distraught to think much more and they have said I can just take time off w/o pay to go out to Philly anytime but not everywhere is that great.  And last minute plane flights are expensive, even if your family member is in the hospital.  Try to realize that it won't help much of anything if your life gets completely turned upside down too.  Try to keep some normalcy...you will need it.

BUT, keep pushing!  I did a lot of work over the phone hunting down other doctors and researching everything and that has helped my mom out alot.  Not all doctors are as difficult as the one you are dealing with and you are completely right to be concerned about the possibility of a stroke.

Good luck...everyone here is so supportive, they have helped me out a lot and I am sure they will do the same for you too.  

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

Wait some of these times out...you can't run yourself into debt and cause trouble with your work too.  Try to realize that it won't help much of anything if your life gets completely turned upside down too.  Try to keep some normalcy...you will need it. BUT, keep pushing!

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

-Shari

I agree with all of the above.  The angio is absolutely necessary.  In my case, they also did a carbon dioxide reactivity test (measures the level of carbon dioxide in your blood vs the oxygen levels-----I understand that most mm's have much higher levels of CO2 than is normal) and a transcranial doppler, which I believe is like an ultrasound of the carotid artieries.....I know that you and your Dad must be worrying yourselves sick, and we are all here to support you....Is your Dad strong enough (I know that, personally, my Mom is a much stronger person than my Dad in dealing with upsetting issues) to politely but vigorously demand that these crucial tests be done and that they be done NOW?  And, he has to keep repeating himself so that the medical professionals do not just give him the brush off.........We are here to support you and your Dad.....Keep the faith....PatM

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 Joni,

I'm sorry that you all are going through such a difficult and frustrating time.

I wanted to ask you a couple of things.  Do you know the name of the doc in Seattle?  You may be able to hear the experiences of others on this board with this neurologist.  When is your mom supposed to see this doctor?  Any appointment scheduled yet?  Would whatever insurance your mom has allow her to go to another state or ,more specifically, to one of the surgeons that people on this board have had wonderful experiences with?

In your last post you questioned why they can't start the tests, specifically the angiogram, now and send the results on to whoever at Seattle.  From my own experience I found that not all angios are created equal.  The neurologist who initially diagnosed me via an MRA told me NOT to go to one of our local hospitals (including the ones she works out of!) because their angios were just not as good in quality as the other hospitals I ended up at.    Maybe the hospital in your mom's area feels they can't do a good job of it?  Just a theory.  One thing that impressed me about your mom's story is that the hometown docs are readily admitting that they know nothing about MoyaMoya and are willing to refer her to someone more qualified.  Nothing worse than a know-it-all doc (who doesn't know it all!) with an ego problem!  

Believe me when I say a lot of us have been there in that horrible waiting game- full of fear and confusion.  Nothing worse than being diagnosed and then the hurry up and wait feeling.  If it makes you feel any less fearful, I had to wait 2 months between my MRA and my angio.  Also had to wait 9 months between diagnosis and surgery.   I'm still here to tell my story!  

Hang in there and know that many of us have your mom in our thoughts and pray that she gets the attention and answers you all need, sooner rather than later.

Lisa

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

Pat here again...Dr. Sean Lavine's # is 212-305-0135, fax # 212-305-3629; Dr. Lavine's e-mail is sl2081@columbia.edu .......you will find him to be a very nice and caring man and doctor.........He will certainly be able to explain to you the importance of having the proper radiologist and neurosurgeon......you can also contact Tom Gallucci from this website who  had dealt with Dr. Lavine on several occasions.....and thinks that he is wonderful......he is also very quick in his response time which is crucial.....like I said, the doctors all appear to know each other in this field, it's lilke a community....will keep praying-----let us know how you make out, dear......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

Okay one more day down!!  My dad really isn't getting anywhere so it's time for me to step up to the plate!!  I told my mom I was going to go ahead and do this and I know she is thankful.  First off thank you once again everyone for all your kind words and guidance.  Just when I think I'm gonna have a melt down I read the messages from all of you and realize I have to stay positive and strong for my mom and that makes it a little easier to cope.  So far it's still looks like the 23rd of June that we'll be going to Seattle to see the neurologist.  We are to see one of the University of Washington Physicians at Harborview, her name is Kyra Becker.  Luckily I do have a friend that works at Harborview and I gave her a call tonight.  She has a friend that works in the Neurology clinic....she gave me her direct number and I'm going to call her in the morning.  Hopefully I'll be able to find out if Dr. Becker has experience with MM patients.  I just want to find out more about her, other than the credentials I was able to pull up from the U of W website.  I also emailed Dr. Steinberg just to get his opinion and see if he knows of Dr. Becker at all.  And Pat thanks for Dr. Lavine's info...he's next on my list!!  I am also going to check into my parents insurance and see what the options are there.  I don't think their insurance is all that great.  It's First Choice through the NW Pipefitters Local 44 (my dad is a plumber).  But I'm going to start making calls to them tomorrow as well because if this Dr. Becker isn't certain I want to know if we're going to be able to take her elsewhere!!  Thanks again everyone.....I'm back at it tomorrow!!

Joni   :-/

Joni,

You are 100% on the right track!  [smiley=thumbsup.gif] 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!  [smiley=thumb.gif]
Hang in there!
Lisa

Thank you sooooo much Lisa!!  I don't feel very strong when it's 2:15 in the morning and I can't sleep because my mom is all I can think about.  You know at least when I'm at work there are other things to keep me busy and keep my mind off of everything.  Well at the very least it's a great diversion.  But when it comes time for me to lay down and go to sleep.....no such luck.  I have to get up for work in less than five hours!!   :o  I know running myself ragged isn't going to get me anywhere either....I just wish I could quit worrying so darn much!! [smiley=worried.gif]

Joni

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

Hi Joni,

I just saw that you were online and I thought I'd ask if you've made any headway yet with all your phone calls and plans.  Find out anything?

Tell your mom I've been thinking about you all! :)
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

Hi Jone,

I feel your pain and frustration.  Keep the faith.  You are going in the right direction.  I wish people knew of mm or at least heard of it so thing could move quicker.  

I feel the surgery is the only answer.  Years ago my sisters doctors had a wait and see attitude.  The mm always does its damage.

Keep fighting and let us know how you are doing.

Janice

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.

Joni----I also hear your frustration and have felt it so many times myself when drs. couldn't  see me soon enough, and I ended up misdiagnosed........try to take a deep breath, calm down, sit in a tub filled with lavender dead sea salts for at least 45 minutes and try to relax...I can see that you are getting frustrated and worn out.......next, get a good night's sleep.....my mom recently had heart bypass surgery in February and this was the first time I had to confront head on the issue of my mom's mortality......it is SCARY!!!!

Now, it can NEVER hurt to get more than one opinion.....I urge you, even though Dr. Sean Lavine is at Columbia Pres here in NY City......call him.....if anything, he will be able to make you feel better and give you some suggestions about how to move the process along more quickly.......he may even offer to let you use his name in the referral process so that your mom can be helped that much more quickly........he is a gentleman, kind and caring.....and he has already agreed to serve on the Board of the Moyamoya Foundation.........I already gave you the information on Dr. L......tell him Pat Martin told you to call him.......

P.S.  If you don't have lavender dead sea salts, just pour some lavender oil or lavender scented tea or some lavender ANYTHING into the tub and soak in the hottest tub you can stand......it will help you relax and get a good night's sleep............it sure beats Attivan or Ambien or Valium any day of the week......if you don't have any lavender, use chamomile anything as a substitute............you will feel calm and relaxed....let us know and keep us posted.....God Bless you and your family.........you are all in our prayers....Pat

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.

Well I did manage to get my mom in with a neurologist in our hometown!!  I guess all my phone calls are finally starting to make a difference.  Her appt is on the 11th.....I just don't want my mom to get false hope that this means we're not going to have to go to Seattle.  I just want someone to take a look at her a little sooner.  I'm worried she's having more problems and she's just not telling me.  I know she is still having bad headaches....that's what kind of started this whole thing.  Lisa I know you asked me and I never really told you.  She'd been having headaches that she just chalked up to allergies.  Then one day when she was grocery shopping she had a real dizzy spell and some numbness and tingling (felt like it was asleep in moms words) in her left side.  She said she got in the car to come home and  had to sit there for a little while before she could even pull it together to drive.  When she got home she started having problems talking.  It was then that my dad said enoughs enough I'm taking you to the hospital.  She's still having speech problems and problems with her left side.  And she keeps falling down.  I was just on the phone with my dad a little bit ago and I heard a big crash and it was my mom...she had fallen again.  I hate the helpless feeling that I have right now.  It looks like I'm going to be flying home on the 17th but I'm not sure how long I'm going to be able to stay.  My job is being wonderful about it but I start summer semester this next monday.  I don't know how acceptable missing a couple of weeks at the beginning of the semester is going to be.   :-/  Of course my mom is more important than school but I just don't want to have to skip this semester either.  And Pat.....thank you for the wonderful advice.  I do have lavender bath salts and I took a nice long hot bath with them last night.  I think I will be getting a hold of Dr. Lavine here soon.  I am working with Dr. Steinbergs office too.  Teresa wants me to get her my moms records from her ER visit so Dr. Steinberg can take a look at them and give us his opinion/recommendation.  Any suggestions on what I should be asking this neurologist she'll be going to on the 11th.  I'm going to get my dad some questions to take with him 'cause I won't be there yet.  Any suggestions would be a great help right now.  Thanks to you all for your thoughts and prayers I know my parents really appreciate it. (As do I!!)  

Joni   :)

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

Hi Joni,  my name is Nikki. I have just found this support group(and everyone seems wonderfull) and saw your post. I just wanted to let you know that I know how you feel. I am 22 and my mom is 43. Almost 2 years ago she suffered a sudden major stroke/bleed in her head. She was in a coma for about 37 days. They did an angiogram and said it looked like mm, but then they ruled it out, then ruled it back in, then out agian. She had recovered to about 80% and was still improving until wed. when she had another stroke/bleed, this one even larger. She is not in a coma this time(thank goodness) but they are keeping her sedated because she is on a respirator for now and she is very upset. they are just now finally kicking in to try and find out definately if it is mm, and if not why this keeps happening to her. My mom has been my best friend and it kills me for her to have to go through all of this, as well as my dad. Just keep hangin in there and pushing for your mom. Everything will work out and when it does you and your family will come out of it stronger and even closer than you ever dreamed. Best of luck!!!  Nikki

Thank you Nikki!!  My thoughts and prayers are with you and your family as well!!  You keep hangin' in there too!!   ;)

Joni  [smiley=thumb.gif]