I actually created this account for my wife, but I thought I'd step in and introduce myself as well as her.  My wife's name is Alma, and my name is Brandon.  We live in Montana, but, she's originally from the Philippines.  Alma's been in the USA for almost 2 years now.  We  have an 8 month old son named Randy. 

On Friday, Dec. 2nd, Alma was diagnosed with MM. She had CT scans, MRI, and Angio for a severe headache she was having.  Her vision was blurry, her chest felt constricted, and she wanted me to hold the top of her head because she said it felt like it was being ripped off. Alma was sent to a neurologist by the ER doctor after something was spotted on the Cat Scan.

When Alma was in the 6th grade, she was paralyzed on the left side.  The doctors in the Philippines diagnosed it as Polio at the time.  Alma had rehabilitated herself to fairly good use of her left side by the time she got into highschool. Our Neurologist now says that this was most likely a stroke, not polio.  He says that there is no evidence of any recent strokes despite the headaches.  He doesn't know if the MM and the migrane headaches are actually connected or perhaps, seperate entities. 

Our neurologist, says that he has only witnessed 2 cases of MM in his entire 35 years of practice, and therefore admits that his knowledge is very limited on this disorder. He says this diagnosis scares him... This wasn't very comforting for us to hear. He says he's researching this more and wants to schedule another meeting with us to discuss a plan of action. 

I'm here because I'm doing some research of my own.  Hopefully, Alma and I can beat this thing.

Thanks in advance, and regards,

Brandon & Alma

Hello Brandon and Alma,
                                     I am sorry for the circumstances that brought you here.  however, you have found the right place.   Let me introduce myself.  My name is Cheryl I was diagnoised with MoyaMoya in Oct 05.  My Neuro in New York has only done about two surgeries on Moyamoya pts. With him telling me this,  i was uncomfortable with him performing the surgery.   I sent my flims to Dr. Steinberg and the following day someone contacted me.  I recently had my surgery and i am happy with my decision on going with Dr. Steinberg.  As Jill mentioned Dr. Steinberg will look at your flims at no charge.
Gook luck with everything.  It will all work out.

Hi Brandon & Alma, Welcome to our MM family!

I’m basically reiterating the excellent advice given by Jill, and I’m sure by all the others you’ll meet here, and that is… how important it is to read and learn all you can about MM disease. You mentioned that your doctor is unfamiliar with it, unfortunately, we see that all too often, and you may encounter many along the way that are unfamiliar with MM disease as well, or many who think they know enough about it, but in fact they DO NOT. That’s why Jill emphasized a Neurosurgeon with experience. (a MM specialist) Sadly, we see MM sufferers misinformed by respected neurosurgeon’s, but only due to their lack of experience with MM disease, and that has heartbreakingly lead them to a stroke. There are so many factors involved and each and every case is different, that’s why we advise getting a doctor with experience, one who knows the many factors involved and most importantly, which direction is best suited for Alma's personal, individual case. Also, by you researching and learning all you can, you’ll then be confident and comfortable discussing the best plan of action at any point, with anyone on your MM journey.

I’m sorry I can’t answer your question as to Alma's head injuries being the cause of her MMD or adding to her problems. Maybe an experienced specialist can better answer that. I can only safely say that, in all my research it stated that the cause of MMD is unknown. However, I have read that recent studies do suggest possible congenital nature of this disease and some studies say the disease is believed to be hereditary in a certain percentage of cases. Still, much more research is needed to get all our answers. This topic was discussed recently here on the boards with some different opinions if you’d like to read it. Lore has an excellent post regarding her research on it.
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1131419174

Again, by learning all you can about MMD, you’ll be able to recognize signs IF possible tests are needed for your son.

If you haven’t already, may I suggest that you watch the video of Matthew Fong? It helped me so much when I first heard the words moyamoya. It’s here on the website under Links, with much more other information as well, if you’re interested.

Please feel free to ask any and all questions. No question is too small, and we’re here if you just need to talk.

You all are in my thoughts and prayers.

Mar

Welcome Brandon to our MM family,

I'm sorry to hear about Alma's troubles but as all have mentioned, you have come to the right place. There is a wealth of information on this board as well as many wonderful people who have or are experiencing what you and Alma are going through and will gladly offer support to you and Alma through your journey.

My name is Lore and my brother Kevin (Cubbie) has MM.  Kevin is probably one of the older MM folks on the board. Kevin had a significant stroke 4 years ago at the age of 43 and also has a dissected right upper internal carotid artery at the bifurcation. Kevin went misdiagnosed and undiagnosed for 4 years. When we finally received a diagnosis of MM all doctors sent Kevin home to live out whatever life he had left simply because they were unfamiliar with the disease and didn't realize the treatment options. So I can really relate to your situation. At least your doctor has admitted he is unfamiliar with MM and is willing to learn. Not so for Kevin's doctors except one. That's when we found this wonderful site which lead us to Dr. Steinberg at Stanford to evaluate Kevin's films. The rest is history and Kevin had two direct bypasses (STA-MCA) at Stanford in May of this year. Kevin is doing well and we are eternally grateful to DJ for this site and Dr. Steinberg for giving Kevin a second chance at life.

I know how overwhelming this is for you and Alma. The advice I can offer is, in my opinion, to seek a second opinion from a MM specialist such as Dr. Steinberg and to research the disease.

The sequence of events for me with getting Kevin treated were 1. Find a MM specialist 2. Read about the different surgeries 3. Understand the importance of the different tests. 4. Learn how important anesthesia is to a MM individual about to have surgery. 5. Get to Stanford ASAP.

Brandon, this is simply what I did for Kevin. Everyone's situation is different. In my opinion, even if you simply send Alma's films to Dr Steinberg, he will render an opinion. At the very least you will know where you stand.

Brandon, you and Alma can "beat" this thing with the proper treatment. As bad as Kevin was, I had little hope that he would survive two brain bypass surgeries given he had a minus blood flow, he had had a significant stroke and his speech and balance were worsening. Boy was I WRONG. I am still in awe of how well Kevin is doing after Dr. Steinberg treated Kevin.... and to think other doctors send him home to die. Like I said, I am still in awe of what can be, given the right opportunity and circumstances.

Please know you and Alma and Randy are in my thoughts and prayers.

Please don't hesitate to ask any questions. That's what we are here for. To support you as best we can.

Hugs to all,

Dear Brandon,

My heart goes out to you and Alma for all that you're having to contend with.  I'm sure you're both feeling like you've been hit with a ton of bricks with her recent diagnosis.  And what a tragic story about Alma's father's treatment of her.

I can understand Alma's fears, and remember vividly how frightened we were upon learning of my daughter's condition.  My first thought was "Why can't it be me instead of her?"  It was terribly painful.  Alma's fears are certainly compounded with what happened to your mom.

What you both have to understand is that MM is definitely a progressive disease.  It won't improve with time, nor will it go away.  The speed of progression is different with each patient, but the fact is that it will worsen with time.  At the risk of being blunt, the way I'll suggest that you (and Alma) look at it is, do you want to risk her living and being totally dependent as the result of a major stroke?

I'll share the story of a recent MM patient.  This patient is 35 and was also recently diagnosed.  Her sister was diagnosed with MM 26 years ago, and suffered a significant stroke.  Because of the lack of knowledge back then, the sister was untreated.  Their family situation was similar to that of your mom, in that their dad died at Stanford 8 years ago as he was undergoing a bone marrow transplant.  Alot of emotional baggage!  Also like Alma, this patient was terrified of the pre-surgery testing and surgery.  She has a 5 year old daughter, though, and was determined to go ahead with the surgical process so that she would live to be a mom to her daughter.  I'm very happy to say that she is finished with her surgery, it was successful, and she is home continuing her recovery.

I am unable to answer your question about insurance, as each plan is unique.  At the time of my daughter's surgeries, we had Blue Cross PPO, which covered everything.  We now have Blue Shield PPO, which would cover it as well.  People sometimes have to fight with their insurance company, but it is well worth it, and there are people here who can give you advice to help you get through the occasional red tape.

Brandon, I know surgery is a scary prospect.  With lots of education for you and Alma, my hope is that it doesn't seem quite so daunting.  If/when you speak with a MM specialist, you will see that they do these surgeries so often that it is absolutely commonplace to them.  Perhaps that will provide you both with some peace of mind about moving forward.

I would be happy to continue discussing this with you, and can almost guarantee you'll have many more questions . . . please don't hesitate to keep asking!  As the others have said, we're here to help support you through this!

from out west,
Jill

     

Dear Brandon -
You and Alma and your baby boy are on my heart.  My daughter was diagnosed with mm in August, 2005.  We had never heard of it.  She, too, had migraines that were increasing, numbness that turned out to be strokes, anxiety, etc. - all related to mm.  Our doctor here in Dallas, TX had never seen a case and there were no doctors here familiar with the disease.  Luckily, we found this website, DJ and Jill and sent all of Kate's films to Dr. Steinberg.  He reviewed them (for free) and got back to us immediately.  We flew to Stanford the following week.  Kate had her first surgery on the left side on Sept 7 and the second on the right side on Sept 13.  She is doing amazingly well.  No more headaches or stroking and will return to school (she is 21 and a junior in college) spring semester.  

I would urge you to send Alma's films to Dr. Steinberg for review since we had such fantastic help from him.  I will be praying for you and your family.  Keep in touch.  Oh, by the way, we have Blue Cross/ Blue Shield, the federal program, and they covered all our costs, less deductions!!

Hugs,  

Cass

Brandon & Alma,

All great advice here and there is not much more that I can add to it except to tell you that I feel for Alma and what she is going through.  I hope you can help her to understand that surgery is the only option though.  Heck, I know it's scary!  There are days that I am still shocked when I think that I've been through two brain surgeries!   But considering the other options.... well, let's just say the other options are not pleasant. 

About a week before my first surgery, I got VERY cold feet.  I told DJ that there was no way that I was going to have surgery on my brain.  NO WAY!  I'll never forget his response.  He said "Don't be afraid of the surgery, be of afraid of what will happen to you if you DON'T have the surgery".    Wise words and I've never looked back.

Alma has already overcome so much so I pray that this bump in the road will not stop her from continuing on the path to a happy and healthy life.
You are both in my prayers!
Lisa

Brandon,

Now that you have a diagnosis of Moyamoya Alma should be treated differently at the ER because it is no longer simply a migraine headache.

I would not hesitate to get Alma to the ER if she is not responding or is confused. Obviously, Alma's symptoms and behavior are different from what you have seen in the past before the diagnosis of Moyamoya.

I'm not a doctor, but my experience with MM is the symptoms Alma is experiencing are typical symptoms and waiting is not the answer. I don't want to scare you nor do I want you to be scared however, this is nothing to mess with. As you are aware, MM is the progressive narrowing and closing of the carotid arteries not artericsclerosis. You want to avoid a stroke. My opinion is get Alma to the ER and especially if the doctor is not responding to your telephone calls.

I don't know why the nurse is acting "nonchalant" about Alma's symptoms and you being able to speak with the doctor unless the nurse has no idea what MM is. It 's still no excuse for what is happenning.

Brandon, I don't know that this is the doctor to take care of Alma if he is not going to respond unless it's not the doctor it's the nurse.

What this boils down to is you have to do what you have to do. If your "gut" tells you Alma is worse or her symptoms are different and you're scared, then you need to get her to the nearest medical facility ASAP.

Keep us posted.

Hugs

Lore

Brandon,

My heart is breaking right now listening to your story.  I can certainly sympathize with you because of my sitauation that I went through.  Before I even had a diagnosis of Moyamoya, I had to go through the same thing you did.  I went to the emergency room a total of 9 times before a diagnosis was made.  Five times I went to the local hospital.  After the second time, they would look at me like I was crazy, and that I possibly couldn't know what was going on with my body and that I'm too young to have strokes.  The sixth time, I went to my mom's local hospital - to no avail...they couldn't find anything either.  Then twice I went to a hospital close to work but not a good hopsital.  They were the same way with me. 

I finally got to a hospital, that really listened to me and at least diagnosed me with a vascular problem.  I was in the hospital for 10 days having every test that they could possibly do.  They finally sent me home on blood thinners.  Then the second time I went to the same hospital, they finally diagnosed me with moyamoya. 

I went home crying so many times because I couldn't believe that people would be like that at a hospital.  My mom said she even overheard one of the nurses say to someone that she's back again and were referring to me. 

Anyway....the only advice I can give you is to get her to the neurologist as soon as possible.  I would even go with information about moyamoya from this site or the one that Lore gave you the link to above.  That way you can hand the information over to the nurse and doctors at the ER if you need to get Alma attention immediately.  But don't ever let the help at the hospital make you feel stupid or that you or Alma aren't worthy!!!!  You know when something is wrong with your wife and it's not all in your head like they thought it was with me.

I'm keeping both of you in my thoughts and prayers.  And good luck!!!

Michelle

Hi Brandon,

I am so sorry you're having to go through this!  Your report of Alma's condition the other day was VERY worrisome to me, and I'm glad you took her to the emergency room.  Unfortunately, it sounds like you're encountering the lack of education found in many parts of this country.  And, a neurologist not returning phone calls is completely unacceptable. 

I'm glad to hear your plan is to send Alma's films to a specialist.  I don't suggest that you trust the neurologist to do it on a timely basis, though.  You'll know the task is taken care of if you do it yourself.  The neurologist's office should be able to provide you with a copy of whatever they have, which can be overnighted to the specialist you've selected.  Just a suggestion so as not to delay things further!

To try to answer your questions about Alma's pain and the tightness in her chest:  Headache pain is common amongst MM sufferers.  I haven't heard of people having tightness in their chest, but I'm not a medical professional, so can't tell you if that is or isn't tied in to the MM.

Your poor little guy!  Gosh, that's a high fever, and it must have had you worried!  Hopefully he'll feel better soon.  You must be running pretty ragged providing care for both Alma and Randy, and I'll say a prayer for you to get some well-deserved rest soon!

Hang in there Brandon . . . keep asking questions . . . and know that we're here to help see you through this.  Please let Alma know that we're pulling for her!

Big hugs,
Jill

Howdy all,

Just got word from Dr. Steinberg, and he says that Alma has Bilateral Moyamoya.  He's concerned about Alma's stroke risk and believes that she should have bilateral revasculization as soon as possible.  I'm contacting them today to make some arrangements.  Alma's symptoms are more frequent, although not always full-blown, as they sometimes are, but the headache and chest tightness & random spasms seem to occur pretty much everytime. 

Several days ago at a Filipino/American Christmas party, Alma was approached by a gentleman who said that he has Moyamoya also.  He has never had revasculization, but he's on a variety of Meds & some herbal supplements and says he seems to be controlling it with that.  I met with him, and listened to what he had to say, but I think Alma's best and perhaps only option is still the revasculization procedure and Alma agrees. 

Teresa & Dr. Steinberg say that they will need us there for about 3 weeks.  I guess it's a good thing I have a friend that lives in Fremont, about 1/2 hour away.  I hope that our insurance will help pay for this.  Our insurance declined to pay on the MRI/MRA films, but that's because they have a beef with Advanced Imaging, which, is the imaging service that our local hospital uses.   

Alma's very active, constantly in motion, and always busy cleaning or cooking.  I try to get her to take breaks and keep from over-doing-it, but she sometimes just keeps plugging along, even when she's starting show symptoms of an attack.  I wish she would listen to me, but she says that if she stays still, then she is forced to think about it, and it makes her depressed.  She's steadily losing wieght, and she's down to 85lbs. & She's  only 5'3".   

I'll drop in now and then to keep you all informed. 

Regards,
Brandon

Brandon -

What a time y'all have had, both with Alma and your son!  Soon things will be much better, I pray.

Know that you will be in the best hands with Dr. Steinberg and Teresa.  We had similar experience here in Dallas, TX, as big as it is.  Lack of experienced doctors re: mmd.  Fortunately, as I mentioned before, we found Dr. S on this website and he responded immediately - the only one who did.  Let us know when you and Alma are headed for Stanford.  Our daughter Kate is 3 and 1/2 months out of bilateral revascularization and has had no more headaches, TIA's, etc since the surgery, Praise the Lord.  I pray that Alma's will be just as successful.

As for the insurance, as I said earlier, we have BC/BS insurance also.  Dr. Steinberg and all of his colleagues at Stanford are also PPO's on our BC policy, so hopefully yours is the same.  Most of the med costs were covered for us.

Y'all are on my heart.  Keep in touch.

Cass in Dallas, TX

Hi Brandon.

So glad to hear Alma will be treated by Dr. Steinberg. You are in good hands. My brother Kevin (Cubbie) had surgery in May at Stanford by Dr. Steinberg. We too were at Stanford for 3 weeks.

I would not take a 9 month old if you have relatives that can help. This is just my opinion since the days were early and long. It would be a handful for you to be with Alma and also caring for a 9 month old.

Testing is done in the 3 days prior to the surgeries. There can be waiting involved not to mention the time for the testing. Additionally, the surgeries are about 8 hours each. Depending on the individual, some feel very good and are able to go places after they are released from the hospital.  Others just want to rest and relax before the next surgery. So it is a very individual thing. Kevin felt like taking small walks and he did go out to dinner at a restaurant a couple of times. He didn't want to be too far from the hospital and I could understand that but he did very well and I think if the person feels like it, it is a good thing to get away from it for a while.   

We flew to Stanford because we live in Ohio. It would have taken us 3 to 4 days just to drive to Stanford and Kevin was in no shape to ride that far. Again, only you and Alma can determine if the drive is too far or to much.  Also, you can contact the airlines and they (Southwest and Delta) there may be other airlines as well, have a program wherein if you can't afford the flight, they will fly you at no cost. You will have to contact them as soon as possible because they like to have 30 days notice. They will fax papers to Alma's doctor and have them sign. There are other airlines like Angel Flight. Check on the board under transportation.

I rented a car when I got to Stanford simply because I got a good deal. It was actually cheaper for me to rent a car than to take a taxi to and from the hospital even though I paid for parking. A taxi to and from the hospital was $30 and I was only a couple of miles away. Public transportation from the airport was $90 one way. Parking at the hospital ranged from a couple of dollars to $5 a day. If the weather was nice, I walked. Also, Stanford will assign a social worker to your case and the social worker can work out discounts at local hotels and also, may be able to house you in a Home/villa near the hospital if there are any openings and if you qualify.

We flew into San Jose instead of San Francisco. It's a little closer and would cost less if you need to take public transportation.

Also, Instead of eating out everyday, I went to the Saveway grocery store and signed up for their discount card and bought groceries. If you stay in a motel/hotel or villa with a small kitchen this is probably the cheapest way to go. I also ate a lot at the hospital and the food was actually pretty good for a hospital. You can get all kinds of things from a salad bar and soup to burgers and pizza to a full meal. The prices weren't too bad.  Sometimes I would make a sandwich at the motel and bring it to the hospital with me to eat for lunch or dinner. I also carried something to drink like water and soda pop. Vending machines and soda pop can get expensive.

Brandon, I hope this helps you. If you think of anything else, or would like further clarification, please let me know. I'll be glad to share my experiences at Stanford with you.

Keep us posted on Alma's surgery date.

Hugs,

Lore