Hi everyone! :) This is the first time posting on these boards, well actually it's my first time posting on any board. I was hoping all of you could mabey give me your opinions on my moms situation. Almost two years ago she had a major stroke/bleed in her head and was in a coma for over a month. They did an angiogram and said it looked like mm. But then they ruled it out, then went back to maybe, then it just wasn't brought up anymore. She got alot better over the next almost two years(about 80% of where she was before) and was even driving and bowling agian and was still improving until wednesday when she had another stroke/bleed, this one even bigger than before(covering about 1/3 of her brain. She is still responsive, following comands, and even talking some when she was off the respirator. They are doing another angiogram in the morning, to try to find for sure if it is mm. Have any of you guys had any expiriances with bleeds in mm? If so, how did they turn out? I am so worried for her. What do yall think?

Hi Nikki,  [smiley=wave.gif]

Welcome! I'm so sorry that you had to meet us this way, but you're in our family now and we'll do what ever we can to help you and support you. You'll meet some wonderful people here who have been through exactly what you and your family are going through.

All I can say to you Nikki is, IMO get a second opinion from a moyamoya specialist! There would be NO maybe it is, maybe it isn't. We see this here all too often. I understand what you're going through watching someone you love experience a devastating stroke/bleed. That is why I urge you to get a second opinion. That is what saved my niece Mandy's life. We got a second opinion from Dr. Steinberg, the best mm specialist in the country. Nancy, her mom can post to the facts in details better than I, she never left her side during the entire nightmare. but Nikki, I believe your mom needs someone experienced in moyamoya, the disease and asap.

You, your mom  and family will be in my prayers. [smiley=hug.gif]

God bless,
Mar

Nikki -

Yes, I agree with Mar...it's so important to go to someone that knows all about moyamoya.  IE...a moyamoya specialist.  Where do you live?  Will her insurance pay to go see an out of state doctor (you can always send the films to Dr. Steinberg to get his second opinion without actually going to him)?  Is your family willing to pay even if the insurance company doesn't.  These are some of the thing that you need to consider, in my opinion.  You need to get a definite diagnosis - not a maybe diagnosis.  Good luck and please keep us posted about your mom!

-Shari

Hey guys, my mom had another angiogram today and they STILL can't give us a definate on whether or not she has mm. I am getting so frustrated!!! [smiley=mad.gif] I have already e-mailed Dr. Stienburg and am still waiting on him to get back with me. I wish he would hurry. They did say that momma had two blocked arteries in the back of her head and that they might be able to do something about it. But I would rather have Dr. Stienburg do the surgery or atleast someone he recommended. To answer your questions STrantas, their insurance usually only covers in the state of AL(where we r from) but my dad said he would see what he could get worked out. As far as the family paying for it, we would definately be willing if we were able. Unfortunately we are all pretty hard pressed. I just don't know what to do. My dad is really paranoid about talking to the docs about getting a second opinion right now because she is so critical and he doesn't want to insult the docs who are taking care of her. I kinda see his point because he just wants to make sure she gets the best help she can and doesn't want hard feelings to get in the way of that. But I don't want the wrong surgion doing surgery on her brain!!! I'm so confused and worried :'( I don't know what to do. thank you guys for your support. Let me know what yall think about all this.

nikki wrote on Jun 8^th, 2004 at 4:46pm:

My dad is really paranoid about talking to the docs about getting a second opinion right now because she is so critical and he doesn't want to insult the docs who are taking care of her.

I kind of understand how your dad feels, however, it's every patient's right to get a second, third, fourth (etc.) opinion to make the right decision.  Brain surgery is, indeed, a scary thing, and I would just want to make sure that I was making the right decision.  Me, I went to two neurologists and then to Dr. Scott...so, basically, 3 opinions.  If the docs who are taking care of your mom are insulted, I wouldn't trust the doctors that they are working in the best interest of your mom (IMO).  I don't really think a doctor would be insulted about getting another opinion.  That's just the way it is.  Again, good luck, and please keep us posted.

-Shari

Nikki,

I agree with Shari 100%. Any decent, respected profesional would understand a second opinion, in fact welcome it, especially in the position you and your father are in, not getting any answers. Your mother should be everyone's number one concern, not ego's. In my family's case, the top doctors at the University of Pennsylvania even had to agree when Mandy was medically air lifted to Stanford, because she was going to the best doctor in the country for this disease. How can any doctor disagree with that, especially if he has answers. Dr. Steinbergs office usually answers his e-mails immediately.

No matter what you and your father decide, we're behind you 100% with our prayers and support. We only want what's best for your Mom as you do.

Please keep us posted.
Mar

Hey guys! My dad said that the docs were not diagnosing momma with mm because it was only on her left side, her right side is normal, but mm can start out on only one side and progress to the other, can it not?And I just saw where Dr. Stienburg has e-mailed me back and said that he would be happy to review mommas case and give us his opinion, and that he would have his nurse contact us! [smiley=thumb.gif] Now if I can just convinse my dad that it will be okay to go ahead and clear it through her docs I will feel alot better. We did have her laughing today at visitation, so her spirits seem to be lifting some. Thank you guys for being there and I will continue to keep yall posted. If yall have anymore advise PLEASE let me know.

Hi Nikki,

It is not unheard of for MM to be present on one side only and then either progress to the other side at a later time (DJ is a good example of this) or to never progress to the other side which is called "atypical MoyaMoya".  Atypical is rarer from what I've read.  Either way, if they truly think she has MM on one side at least and she has already had 2 fairly serious strokes, I would think that surgery might be an option for her.  Did the docs say anything about carotid arteries being blocked?

As for getting a second opinion, you don't necessarily have to tell your mom's docs that you are doing this- right now at least.  They don't need to give permission.  Although, you could be honest with them and if they react badly that should raise a red flag that you all should be going elsewhere.  Don't be afraid of hurting the doctors feelings or what they are going to think!  Smart people get 2nd (even 3rd & 4th) opinions all the time!  I bet these doctors would do the same thing if their loved one had a rare and potentially deadly disease.

In the meantime, I would get copies of your mom's most recent films ASAP  and get ready to overnight mail them to Dr. Steinberg.  The sooner the better in my opinion.

Finally, have you been able to get your dad on this website?  It might help him to better understand what's going on and what to do if he reads all of the MMers experiences here.

I'm so happy to hear that your mom was in good spirits tonight!  Let her know that all of us here are pulling for her!   :)

Lisa

Hi Lisa :) The docs did say she had three blocked arteries on her left side, one was there the first stroke and the other two are new. My dad hasn't been able to get on this site because he has not left the hospital, so he doesn't have access to a computer. I have already told him that it would be good for him to look at this site and see everyone elses stories, but I doubt he will leave her side long enough to look until she is back at home. I will tell my dad everything yall have told me and see if I can't get him to go ahead and get her films. Thanks guys!!!! Talk to yall soon.     Nikki

nikki,

how bout printing some of the things from the website here and taking them to your dad at the hospital, that way he can read while he stays by your mom's side.

my daughter had mm more severe on her right side (99%) blocked, and on her left was much less (25%) blocked.  Although she didn't have a stroke, we were fortunate enough to catch it before that happened.

but i'll share this with you nikki, the first neurosurgeon (sp) that we went to wanted to do the surgery, but i said no, i wanted a second opinion first with Dr. Steinberg, which at first upset her, and then i explained to her that He was a specialist in MM, and i wanted the best for Holly, we had a lengthy discussion about my reasons, and after that, she understood more of how i felt, and why i wanted to go some where else, they at that hospital were not specialized enough in MM to my satisfaction.  Please tell your dad, to consider all options in this, and if your mom is stable enough for a few more days to at least let another Dr. look at them (like Dr. Steinberg) and give his opinion, it may be that its not MM, but something else that he can advise on as well.

It never hurts to have others take a look...

best wishes to you all, and give your mom a hug from us all here at MM.com

Hillary

I agree with Hillary!!! Very well said girl!!

Another thing Nikki...DJ just brought this excellent point up on another post today. Have you seen the video on the home page of this website? If you could get your Dad to see this, perhaps it would answer alot of his questions and his fears.

Just a thought!

Mar

Hey guys, just wanted to let yall know that momma is out of NICU and in a private room now. She is doing very well and hopefully she can go over to the rehab building soon.                           Nikki

Hey girl!

Thank God!! My prayers were answered! Now to get to the bottom of it and get her on the right path. Give her a hug from all of us. She's in our continued prayers. [smiley=hug.gif]

yayyy, a step in the right direction to getting her well again, were you able to talk to your dad about sending Dr. Steinberg copies of films?

Hillary

Nikki,
         Great news! Keep pushing.

Still workin on Dr. Stienberg. We still haven't heard from his nurse yet. Do yall think think I should e-mail Dr, stienberg agian and let him know we haven't heard from her yet and give them mommas room number?      Nikki  

Nikki,

Yes, I would try e-mailing again, or better yet just call the office and ask to speak with Theresa directly.  You will never regret getting a second opinion.  The more I read about your mom's experience, the more uncomfortable, I personally, feel with the care she is getting and the knowledge of her doctors.

It's so great to hear that she is out of NICU now!  She is still in my thoughts and prayers!

Lisa

Nikki - We will add your Mom (and also your Dad and you) to our prayers.  Campbell

Thank you Campbell [smiley=thumb.gif]. We need all we can get.

Hey guys!! Just wanted to let yall Know that momma will be gettin moved to the rehab building in the next couple of days. The hospital is supposed to be gettin mommas films together and will be sending them to Dr. Stienberg for us!!!!!! [smiley=sayyes.gif] If we need to go to Stanford, how long were yall at the hospital with the surgeries, did the hospital provide housing for the family, did you have to stay in a hotel? Yall let me know. Thanx alot!!          Nikki

Nikki,

Yea!!! You are on the right track --- stay strong.  Will keep your family in my prayers.


Janice

Niiki,
              We stayed for 3 weeks they will do your mom's surgery one week apart to the day. I told your Dad about the housing. They have  like a Ronald McDonald house where you stay for free but it fills up quick so as soon as you know your going call Mike Thompson he handles it.
                              Nancy