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

Dear Brandon and Alma,

Welcome to our MM family!  I am sorry for the circumstances that brought here, but boy, have you come to the right place!  There is definitely a feeling of community here and wonderful people who have all walked the same road in one way or another.

Good for you for starting to educate yourselves!  It's one of the most important things to do.  The second is to find a MM specialist - someone who sees it on a DAILY basis.  Alma's neurologist having seen only 2 cases over 35 years is not unusual.  Unfortunately, that's the story with most doctors.  However, there is a very small handful of doctors with alot of experience.  

Before I go further, it's my turn to introduce myself.  I am the mom of an 18 year old girl who was diagnosed in 5/04 and had her surgeries in 6/04, at the age of 17.  She had been diagnosed with migraines at age 6, and now in hindsight, we consider ourselves very lucky that she didn't have a major stroke prior to getting the "real" diagnosis.  Fortunately, we were referred to one of the few specialists I mentioned above.  Tara's surgeries were successful, and now you would never know she'd had surgery!

Other than educating yourselves, my suggestion is to send Alma's test results to Dr. Gary Steinberg at Stanford.  He has performed several hundred MM surgeries, and is willing to offer an opinion free of charge.  I can recommend him without hesitation.  His expertise with this disease is unparalleled - you just can't get any better care.  In addition to that, he has a wonderful bedside manner.  People are coming to him from all over the country (and world).

Good luck to you as you sort this all out and decide how best to proceed.  Please don't hesitate to ask questions here!  Everyone is willing to offer advice based on their knowledge and personal experience, and you'll find a great deal of support as well.  Keep us posted . . . you will be added to my prayers.

Warmly,
Jill

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.

Thanks Jill & Cheryl.  This finding by our neurologist was certainly not what we had expected.  I guess we are still in shock from it all.  Questions pop into my mind from time to time.  I haven't had a chance to go through all of the info I have found thus far on the web, so please forgive me if some of my questions have already been asked by others before.  

My first concern is my wife... well, since I have an 8 month old son, I would have to include him in on this first concern.  Having said this, is there any evidence suggesting that this may be hereditary, (is there a possibility that our son may develop MM?) or is there anything suggesting possible outside influences, like, envioronmental, some kind of trauma, etc.?

Part of the reason I ask this, is my wife's father was very abusive toward her.  He would always club her or hit her in the head with whatever was handy; fist, large spoon, rattaan stick, whatever...  She said that when the loss of use of her left side happened, it was immediately after he had pushed her from a height, and she fell down onto some rocks. Although I'm not sure if his inexcusable actions had anything to do with bringing on, or triggering the stroke, I am sure it couldn't have helped.  It probably doesn't matter at this point, because what's done is done and it can't be taken back.  I guess it's out of curiosity more than anything, and Alma seems to blame her father for that incident, even before she was diagnosed with MM.

I have more questions, but I have to cut it short for now,  the baby needs me!  

Take care!  

Brandon

Hi Brandon & Alma, [smiley=wave.gif] 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

Brandon,

Hi and welcome to our MM family.  I know it's tough what you and your wife are going through right now, but it really doesn't need to be.  I reiterate that you need to read as much as you can here as I believe knowledge is power and the importance of you to see an MM specialist.  

Let me introduce myself.  I was diagnosed with MM in September 2004.  I am a 34 year-old female that had been misdiagnosed for a year before they finally figured out that I have MM.  I finally had my surgeries with Dr. Steinberg in CA.  He is an excellent MM specialist and is highly recommended by not only me, but my brother.  My brother started with symptoms in April 2005 and was diagnosed with MM in September 2005.  He had his surgery in November 2005.  We believe that Dr. Steinberg and his staff are the best in what they do.  Just our opinion though.

So....as to the hereditary factor, I've read that it happens in less than 10% that someone in your family will have the disease as well.  I always say it's about as common as having MMD.  After Dr. Steinberg saw my brother's case and after his surgery, it was suggested that by Dr. Steinberg that my mom get tested with an MRI/MRA as well.  I'm sure this is just a precaution since she isn't having symptoms.  But if I were in your shoes, I would have my son tested and re-tested every couple of years.  Just my opinion.  

I will keep you and your family in my thoughts and prayers and if you have any questions, please do not hesitate to ask.

Michelle

Welcome Brandon to our MM family, [smiley=wave.gif]

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, [smiley=hug.gif]
 

Many thanks to all who have posted thus far.  I'm definitely doing what I can to research MM.  You all are very helpful and supportive, and I thank you for that.  

We have a bit of a dilemma in that Alma is quite insistant that she doesn't want any type of surgery.  It actually scares her more than dying from MM, sadly to say.  This is fueled in part by the fact that my mom died a few years ago from complications from a surgery that she had done.  It wasn't anything to do with anything like MM, but just the outcome of the surgery it's self and the details that we learned of how she died, is enough for Alma to pretty much have her mind made up about any kind of surgery.  I'm also dealing a lot with some of her beliefs and superstitions, which are also very much a part of her, and seperating her from that, even if it's to save her life is going to be difficult.

Another question I haveregarding the surgeries, is, are these surgeries covered by insurance?  We have Bluecross Blueshield insurance.

Regards,
Brandon

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!

[smiley=hug.gif]from out west,
Jill

     

 

I couldn’t agree with Jill more. As scary as surgery may seem with any illness, and understandably so, it’s the ONLY option with MM disease in most cases. See, with MMD, you’re vessels to the brain are occluded, therefore lacking sufficient blood flow the brain so desperately needs, and this blockage progresses over time, and the scary and dangerous part of this disease, is a possible stroke from the lack of oxygen and nutrients your brain must have. Once you have a stroke, for the most part, the brain cells then cannot be repaired. The inexperienced doctors where we live, told my niece she should wait to have surgery. She had 4 devastating strokes, in a coma, on a feeding tube, incontinent and her life is now changed forever at 21 years old. I'm sorry for being blunt, but this is the possible outcome when nothing is done. We emphasize a specialist, so the correct procedure will be easier on the patient, and hopefully get them the proper blood flow to prevent the inevitable stroke or perhaps death. Dr Steinberg saved my niece's life.

If you read previous posts on those who have had the many different surgeries, you’ll see the great success stories, and excellent recovery most have had, depending on there condition and other problems they had for their individual case. Again, the doctor has a great deal to do with the success, IMO, and it's equally important if treated before the disease can cause other complications. Early diagnosis and treatment ASAP is so important!!

Hope you and Alma read how many have bounced back quickly from surgery and are doing so well. DJ, who founded this site, was up putting this website online, the day of his surgery in ICU. Amazing, huh? Think positive, and know you have all our prayers with you.

Mar

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,  [smiley=hug.gif]

Cass [smiley=cowboy.gif]

Brandon,

I have a link to the Chicago Institute of Neurosurgery and Neuroresearch. Although the information speaks of children, it gives you a good definition of MoyaMoya and the types of treatment available that apply to adults such as the STA-MCA surgery as an example.   Here is the link:

http://www.cinn.org/ibsc/pediatric/moyamoya.html

Hugs, [smiley=hug.gif]

Lore

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! [smiley=yikes.gif]  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!
[smiley=hug.gif] Lisa

Thanks to all who have replied with kind regards and valuable information.  Sorry I haven't responded in a while.  I spent the entire day yesterday trying to get ahold of Alma's doctor to no avail.  I left several messages with the secretary and the nurse regarding Alma's condition, as she seems to be  having great difficulty both yesterday and today.  I'm going to insist on speaking with the doctor as I insisted yesterday.  I'm about to get a different neurologist because I'm very disappointed in the fact that he hasn't responded at all to my requests to speak with him.  

When I came home from work yesterday morning, things were pretty shaky with Alma.  First, she complained of a bad headache (migrane) and she said she felt dizzy and her vision was blurry or hard to focus.  She also complained that her entire right side of her body from her head to her foot felt weak and tired. She also said it was hard for her to breathe.  I gave her the migraine medicine (fioricet), which helped the migraine, but not much else.  She went to sleep, and when I tried to wake her, I had to really shake her and work at it for over a minute to get her to come to, and when she did, she was very confused, didn't know where she was, and for a few seconds, she didn't even know who I was.  She kept asking, "Am I home?", and I would say "Yes, you are home".  It took her a few minutes to sort it out, but it really had me scared!  Especially the fact that I couldn't wake her for a while and had to use such effort.  This whole thing has me really scared, and I was really hoping that the doctor would at least give me a call back, especially since I told the nurse what was happening.  The nurse seemed very nonchalant about it all, and that really bothered me.  I'm thinking this is not good, this is not normal... Why is she so seemingly indifferent about this?  Am I over reacting?  I'm ready to take her to the ER again, although, I'm not sure that they can even do anything for her.  The reason I say this, is that the last time I took her with these symptoms, they just basically put her on an IV and let her ride it out with some migrane meds.  She resists my attempts to take her to the hospital.  I don't know what to do.  

Regards,
Brandon

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

 

NO way should any neurologist office be nonchalant about the symptoms you just explained. Lore is absolutely correct Brandon. These symptoms may very well be warnings of a pending stroke. Please don’t hesitate in getting Alma to the ER, and insist she see a neurologist with MM experience, immediately!! If they do not have a doctor with experience, have them contact one who does. If you over night her films and records to a MM specialist, like Dr. Steinberg, you will get the answers you need, immediately.

Our continued thoughts and prayers...

Mar

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

Thanks for the responses.  I've already taken Alma to the ER.  They did some CT scans, and nothing has changed according to the CT scans, but she still exhibits these symptoms.  The only things the docs told me they can recommend at this point is to keep giving her the Fioricet for her headaches, and try to contact our neurologist first thing on Monday... by the way... still no response from the neurologist.  He was apparently out of town or something for one day, but he still never returned any of my calls as of yet.  The docs at the ER told us that given the nature of her MMD, they are pretty limited in what the can do for her, as they can't treat it like a standard stroke, because of the possibility of bleeding.  When I get ahold of the neurologist, I'm going to have him send Alma's films and info to an MM specialist.  I don't like having to go to the ER and feeling completely helpless because they can't do anything about it either.  I worry a lot about her pain and tightness in her chest.  Is this a common symptom?  

To make matters worse, our son has an upper respiratory infection and has been running high temps.  I had to take him to the hospital for his 104.6°F temps.  It's been really hectic around here.   I'm running around like a busy little nurse... well, I'm not so little, but anyway...  

Warm regards,
Brandon

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

Brandon,

So glad to hear from you. You are a good husband and father. Remember you are only one person. It's tough trying to take care of one but two is a different thing. Know we are here for you.

Jill pretty much said it all very well. I really can't add anything additional other than support.

I'm glad you got Alma to the ER. I can tell you that I went through the same thing with Kevin. The ER docs didn't know what to do and the neuro said there was no known treatment! YIKES!!! That's when I found this site and got Kevin's films to Dr. Steinberg at Stanford. The rest is history. Kevin had surgery in May at Stanford by Dr.Steinberg. Kevin was in bad shape and Dr. Steinberg is the only doctor that gave us the time of day. I know you will feel better when a neurologist pays attention to you. Like I said before, there is no excuse for a doctor calling back or at the very least getting a collegue to call you back.

You hang in there and keep us posted.

Hugs,

Lore  

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,

Good to hear from you.

Alma is in very good hands with Dr. Steinberg. I'm glad to know Alma is getting proper medical treatment sooner than later.    

As for the individual who has been diagnosed with MM but just takes meds; well, I don't understand that since the only treatment for MM is surgical intervention. Is it possible this individual's doctor perhaps suggested the individual wait to have surgery? Medical (drug) management doesn't slow the progression of the disease or correct it.  Actually, there is no so called "medical management of MM. It may be that the individual is taking something like high blood pressure meds, for instance, which help with high blood pressure but that is to control the high blood pressure not to control the MM. So the individual may be taking meds for other conditions that may or may not be directly related to symptoms of MM.

As for the insurance, it depends on what kind of insurance you have and who it is through. You may want to check to see if you are required to get a preauthorization. Some insurance companies require it and if you don't sometimes there are penalties associated with not getting a preauthorization. Let me know if you need any assistance with the insurance. I am an Insurance Agent and a Benefits Management Analyst.

I would speak to your doctor about Alma being overly active even with symptoms and if she gets depressed. Perhaps the doctor can give her meds to assist with those issues until you get to Stanford.

You and Alma are in my thoughts and prayers. Please know that we are here to support you through this journey.  

Let us know when you leave for Stanford.

Hugs,

Lore    

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

Teresa had contacted Alma and I and said that they would need us to be there for about 3 weeks, and to look at being there around the 3rd week of January.  She was going to get back with us about an actual surgery date later.  

A few questions regarding making preparations to go to Stanford/California.  We live in Montana and we have a 9 month old son, so we are not sure if we should drive or fly there.  I'm afraid if we fly, then we would be without transportation to get us to and from where we need to go.  If we drive, I'm not sure how a long road trip would affect Alma.  I also wonder if it would be better for us to leave our son with our relatives here in Montana while we go, or if we should bring him with us.  I'm afraid if the days at the hospital are very long, then he may get fussy, besides, taking care of both my wife pre/post operatively, and tending to my son's needs at the same time, in a strange environment may not be easy on any of us.

What is a typical day at Stanford like?  How often do they need us to come there throughout the 3 weeks?  What's it going to be like when she gets out of the hospital after surgery?  Is it better to fly or to drive?  Naturally, when it comes to figuring all this out, I have to consider my limited financial resources as well.  

Perhaps if I know what to expect during those 3 weeks, it might make it easier to prepare.  

Thanks and regards,
Brandon

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      

I recently had surgery at Stanford with Dr. Steinberg and I have a 5 yo daughter.  We brought her and she stayed at a nearby hotel with my Mom and Sister.    My husband had serious out-of-town surgery when my daughter was 7 months old and she stayed behind.

So, speaking as a patient and as a caregiver, I would definitely recommend leaving your son at home unless you have someone that can fly out and stay with him.   Yes, you will miss your son, but he is probably too young to have a hard time without you -- it'll be harder on mom and dad not seeing him than him not seeing you (kids have no concept of time).   You will need to be there for your wife and tending to a little one without any help is A LOT, you will be exhausted (just from the plane rides).  Just my opinion.

I live within two hours from Stanford so my experience as far as a typical day might differ from your 3 week experience.  You will have pre-op testing for a donor artery which includes a cerebral angiogram, Xenon test (or Spec test), and MRI.  Depending on the scheduling, you should be able to do this over 1 or 2 days (I did this over 2 days).  I had an appointment with the Clinic the day before surgery.  Also, the day before surgery I had doppler testing, registered for surgery, and met with an anesthesiologist. I went to clinic one week after my surgery to check in and have my staples removed.  I return again to the Clinic next week (over a month after my surgery).

It sounds like you have a place to stay which is fortunate.  Just in case, Best Western on El Camino (it's on the patient hotel recommendation list from Stanford) is relatively reasonable and extremely convenient, close to Stanford (it's at Sand Hill Road and El Camino; Stanford is on El Camino) and Safeway. We stayed there for my pre-op testing.

Good luck to you and your wife.

Dear Brandon and Alma -

I am so glad to hear that you are going to Stanford and that Dr. S will do your surgery, Alma.  He is wonderful!

Montana to California is a long drive.  You might check with Teresa and see what she thinks.  When Kate, our daughter, had bilateral surgery in Sept. '05, her left side was so bad that Dr. S felt she would not do well on a long car ride (Dallas, TX to Calif.)  We flew, but did not know about the special airline programs that Lore mentioned.

 We ended up being out there for four weeks instead of three, as Kate had swelling that had to go down before she could have her staples removed.  We were at the hospital a lot !!  So it might be very helpful if you could leave your son with family.

Also, the social worker told us about apartments that Stanford has for very little $$.  We couldn't use one because you can only have 1-2 people max stay there and when Kate was between tests, we had three.  So we stayed at the Skyranch Inn; they have a good rate if you are at Stanford.  

We also flew into San Jose and rented a car.  It was cheaper than San Francisco and much closer.

I am praying that all goes well for you, and that your Blue Cross/ Blue Shield will help out as much as ours did.  Again, you are on my heart and we will be thinking about you while you are in Calif.  Bless you all.

Hugs and prayers,

Cass, Kate and Jon in Dallas

Brandon & Alma:

I too am glad that Alma will be getting treated at Stanford - you are definitely in good hands.

I had surgery with Dr. Steinberg in May 2005 - on the 3rd and the 11th (left, then right side, direct bypass).  I am from New York, and I flew.  Mercy Airlift will fly both of you for free with confirmation from your doctor that you are going for a medical need (see the transporation section as Lore indicated - patient and companion only).  I used this, and it was great.  We had to change our dates, and they are very amenable to this.  The flights are donated by airlines so there are minimal costs to the organization.  They just coordinate for you.  

I too would recommend that you leave your son with someone.  I am sure it would be hard for you, but it will be very difficult with all the tests, etc.  Pre-surgery you will be very busy, and post-surgery you will need the rest.  

We too rented a car and stayed in a hotel (stayed at Marriott Residence Inn - very nice, with kitchen, and free breakfast).  There are options that the social worker can provide as Cass mentioned above, but that is for 2 ppl max and I had an 'army', as Jill likes to say.  :)  We too flew into San Jose and the rates for car rental were pretty good for 3 weeks.  

I hope this helps.  My thoughts are with you during this difficult time.  I'm sure Alma will pull through it all with flying colors!

Regards,
Trina

Hi Brandon,

You've received great advice from several people.  I, too, will voice my opinion regarding bringing your son, as well as shed some more light about what you can expect as far as Alma's hospital stay.

First, MM surgeries are usually done on a Tuesday or a Wednesday.  Typically patients remain in the hospital until Saturday or Sunday, depending on surgery day and individual recovery.  Assuming that Alma will likely have her surgeries on consecutive Tuesdays or Wednesdays, it means that she'll be out of the hospital just 2 or 3 nights in between.  While she's in the hospital, I would guess that you'd like to be there with her during most of the days.  I know that when Tara was in the hospital, we stayed until about 10:00 pm each night following her first surgery.  We actually slept in her room after her second surgery, as she had some speech difficulties, and it was a bit frightening for a short time.  My point is that having a baby you are responsible for providing care to may be really difficult.  Stephanie made a good point - leaving him with relatives in Montana would probably be the hardest for you and Alma.  He won't understand the amount of time that has passed while you are gone.  Also, like she said, it's a different story if you have someone who comes to California with you to care for him.

The flying/driving issue is one you should discuss with Teresa.  Each patient's medical situation is different - one may be better able to handle a long road trip than another.  Again, I would ask the advice of Dr. Steinberg/Teresa on that one!

Have you been in touch with Social Services at Stanford?  Michael Thomas is usually assigned to MM patients, and he may be able to steer you in the right direction with flights.  He can also provide information about the Stanford apartments, but I know you're planning to stay with a friend.  Let me know if you need contact information for Michael.

Brandon, I'm sure all of this feels pretty overwhelming.  There are many logistical things to figure out, but if you try to address one thing at a time, hopefully it doesn't feel like too much of a burden.  Please let me know if I can help you out with any of it, o.k.?  You, Alma and your little guy will remain in my prayers.  

Warmly,
Jill

Thanks everyone.  It has been decided that our little guy will stay at home with friends and relatives.  

Alma's surgery dates are for Jan. 31, and Feb. 7.  It may now be up in the air as far as where we will stay, as we were originally going to stay with a friend, but that option may not work out after all.  

Teresa says that she would recommend flying since Alma probably won't feel much like a 2 day car ride after she has had surgery.  As for the flying, part, I have a response from AngelFlight, but I'm wondering if taking a non-pressurized plane is such a good idea in this case. (I'm asking Teresa about that one too.)

Thanks again for all your responses.

-Brandon

Hi everyone,

To anyone who has been following this thread, it is February 9th, and Alma is 2 days post-surgery.  She had her first surgery last week, the second this week.  She has had a fairly typical course, although she is experiencing a pretty significant amount of nausea.  She actually looks great, the incisions look healthy, and her spirits are good.  Dr. Steinberg gave very positive post-surgery reports, so that's awesome news for them!  

As Brandon posted, they decided to leave 10-month old Randy at home with family friends.  Alma gets teary when she speaks of Randy, as she misses her baby a whole bunch.  Pictures of him went into surgery with her, and she now has them taped to the rails of her hospital bed.  Please keep the prayers and good thoughts coming for these very, very nice people from Missoula, Montana.  I know Brandon and Alma both appreciate them, and I'm sure they'll be making a post when they can!

Hugs to my MM family,
Jill

Another update on Alma.  Even though she looked great yesterday, she looked even better today!  While I was sitting with her and Brandon at the hospital, Michelle and Cass individually called my cell phone to extend greetings and well wishes to them.  Thanks guys, I can't tell you what a day-brightener that was for them!!!!!  Alma is a tiny person (like 85 pounds), but her smile is huge.  She got giggling at a funny story Brandon had from a bus ride he took today, and it was great to see her in such good spirits.  

It looks like discharge day will be tomorrow.  They'll be here for a few more days, and will probably fly home next Friday.  I'll be hanging out with them off and on, so will be happy to pass along any messages to them.

Hope everyone has a great weekend!

[smiley=heart.gif] Jill  

Thank you Jill for the update. I’m so happy to hear Alma’s doing better—our prayers were answered. What better hands could she be in!?!

Please send them my best and tell Brandon he deserves a big “atta boy” as well.  His part through all this isn’t an easy one either. God love ‘em both! Tell Alma we’re proud of her and to keep smiling!

My continued prayers are with them always.

Mar

Was really glad to hear about how well things went with Alma on her second surgery.  I know it's got to be tough for Alma being away from her child.  Just tell her to keep her chin up and that I think she and Brandon are absolute troopers.  

Please let them know that I continue to think about them and keeping them in my prayers.  

[smiley=hug.gif]
Michelle

Tell Alma I'm glad to here the news thats so wonderful. The worst is over and no were to go but foward our thoughts and prayers are with you and your family.
                                     Nancy

Hi all,
Just thought I'd write a little note to let you all know that Alma is home and doing great as far as the surgery went, but is still a little under the weather with the flu bug, as am I.  

I can't thank Jill and her family enough for all that they have done for Alma and I.  She made our stay in Stanford, a lot more bearable, and provided a lot of good information to us so that there were hardly any surprises.  We are so fortunate to have found such wonderful friends.  

Alma and I also thank Dr. Steinberg and his crew (naturally) for their wonderful work and the new lease on life we have together.  

Our little guy was happy to see us, and actually remembered us after a month of absence from his life.  It did our hearts so good to finally see him when we got home.  Unfortunately, now, he also has the same flu bug that we have, so now we are all miserable (but happy) together!  

I'm happy to have found this message board as it made our quest for answers and solutions much easier.  I thank everyone here for their information and support.  Thanks to DJ for making this board available.

I'm sure that there is still much for us to learn and iron out  as we go along and she continues to heal, but we'll take it as it comes.  We'll keep you all posted as we go.  Hopefully, we can return the favor and offer our experience and support as we lelarn more.  

Thanks again!

Regards,
Brandon & Alma

Hi Brandon & Alma,

I'm so happy to hear that Alma's surgery went well.  I'll be at Stanford in April for my surgeries.  I'm looking forward to it.  I can feel for you.  I recenty caught the "bug" and trying to shake it off before surgery.  It's pretty difficult because I bring it home, give it to my boyfriend, and he gives it back to me.  [smiley=ohjez.gif] It's just a vicious cycle, I'm afraid  to take any kinds of meds in case it causes another bleed.  I live with a constant headache.  Hopefully the surgeries will help alleviate them.

Will keep in touch....

Jan

Hi Jan, & thanks.  

Yeah, the meds thing is a tough one.  I think they told Alma that she could only take Tylenol.  It didn't usually work too well for her, but some comfort was better than none.  

This flu has been the worst I've been sick in quite a while.  It's even worse when the whole family has it, and no one can hardly move.  

I pray that your operation is as successful as Alma's seems to be.  Already, (even though she has had the flu) her appetite is back, her short term memory seems to be improving.  The only headaches she has are the ones you would expect with just having had surgery on your head, and those seem to be diminishing with time.  In fact, mostly for her, it's not a headache that bothers her, as it is where she was cut open and then stitched that seems to give a creepy-crawly sensation to her.  There seems to be a renewed light in her eyes that I just can't explain, that seems to have been absent for a long time.  Even though she's only 5'3" & 85lbs. she loves to eat again, and that does my heart good!  

The surgery and recovery are not easy, but it's been so worth it.

Just hang in there, stay positive, and focus on the future.  Your attitude going in, I think dictates a LOT in how well and quickly your recovery is.  Do something or focus on something that sets your mind at ease before you go into surgery.  One thing I did with Alma the night before her second surgery, was something I wish I had done before her first surgery, because it completely changed her attitude and outlook both going in and comming out of surgery.  That one thing we did, was I helped her pray, I just held her hand and I said a little prayer.  I'm not normally an outwardly religious person, but my wife is quite deeply religious/spiritual.  It was just this one thing that I did for her, and it seemed to change everything.  It set her mind so at ease about the second surgery that I think she seemed more happy and alert after her second surgery than the first.  Do what works for you, and have your boyfriend help you if need be.  I think it's really important.

Take care,

Brandon

Hi Brandon,
I am so thankful that Alma's surgeries went well.   ;)Following your thread has been such an encouragement to me. My surgery is sked for March 8th.  We are looking forward to the surgery and meeting Jill, as well as Dr. S and his staff.   I for one can't wait to get rid of these headaches, I'm also looking forward to getting on with life!  :D

I pray that the flu will pass quickly from your household.  Please keep us posted on Alma's recovery.  God bless your precious family.
Lee

Hi,
 My name is Wendy and I have a 5 year old daughter that was diagnosed at 2 years of age with a morning glory in her right eye.  Recently she has developed substantial hearing loss in her right ear.  I was trying to find something on the internet to help ease my mind that maybe this might just be coinsidental when i stumbled into this site.  We are working with the doctors to figure out what might be the cause but most do not seem very familiar with her condition.  I just wanted to say thank you for starting this site because it has opened my eyes to possibilities of things to look out for.

Hi Brandon and Alma -

I've been quite busy with my dad (nursing home) lately and just now read your last post (although I do talk to Jill regularly, so I know you are doing well, Alma.)  

Kate got a bad cold and bronchitus after her surgery and was limited in what she could take.  She has now discovered Coricidin that does not affect blood pressure and says it works well with colds. Maybe with flu also? Along with Tylonol for the aches?  Anyway, I know she is careful about taking a lot of anything.  The first month or so after we were home, it seems like we were e-mailing Theresa everyother day to check on meds or something !!  She never did mind, though - Such an angel.

I am glad you are home with Randy, and rest assured that you will progressively feel better.  Just do not try to do too many things at once - take it slowly.  Kate's surgery was middle of Sept; she started back to school in Jan (junior in college) and is doing well, but still fatigues some.  Takes a while to build up stamina from two major brain surgeries. Duh!!  

We will be going to Stanford in March for 6month check!
Time really flies.  Wishing y'all the very best!

Love and hugs,

Cass in Texas