Wow, we are really getting an education on this board. More than from our doctor.

My husband had a hemorrhagic stroke on Jan. 3rd while he was at work. He came home and went to bed because he thought it was a migraine. When I took him to the hospital that evening, they did a CT and found the stroke. I was told to call his family as he may not make it through the night and he was sent by helicopter to St. Louis University Hospital. The next day he was diagnosed with MMD.

At first we thought this was something they made up, then they explained it and told us he would need surgery within 2-3 weeks once the blood on his brain had dissapated. Question #1: We were led to believe that the bypass surgery would restore blood flow to his brain and would fix the problems and he wouldn't have any more issues with his MMD. We weren't aware that it is a progressive disease until yesterday. The doctors led us to believe that this surgery was going to fix it all. Is this normal? Have others out there had this experience with doctors and MMD? He was in the hospital for 18 days, in ICU twice, had a ventriculosotomy to help move the cerebral spinal fluid around, and was put on an entire pharmacy of meds. We were told on day 6 in the hospital that he can't have the surgery as soon as they expected because the damage to his brain from the bleed was going to take a lot longer to heal, so they said they wouldn't be doing the surgery for 3-6 months. In the meantime, they would send him home to rest and to heal. He came home on the 20th, was home on the 21st and feeling ok considering the circumstances. On the morning of the 22nd, he was sitting on the sofa, talking to me while I was making his breakfast and grabbed his head and started screaming in pain and started projectile vomiting. I had to call 911 and have him taken to the hospital where he spent the entire day only to have the doctor come out and tell us "He may have these episodes where his pain is so sudden and intense. This could keep happening again and again for a very long time. I don't know why they didn't tell you this when you were here before." Question #2: Are these kinds of episodes normal? Will they continue after he has his surgery? They sent him home that afternoon with more pain meds and told me to stop giving OTC tylenol and start giving him scheduled pain meds every 4 hours whether he asks for them or not. Question #3: Other than narcotics, are there any other meds that will help with severe head pain? I only gave him scheduled doses for the first 2 days after this happened, then we went back to OTC meds as needed, narcotics for severe pain only. The last thing we need right now is for him to get hooked on painkillers. Along with the pain, he now also has high blood pressure, blood sugar issues, severe exhaustion and is at risk for seizures and strokes. I noticed that he was having little episodes where his face is drooping on the left and his speech is slurred. Every time this happens, I check his blood pressure, bilateral motor functions, pupils and orientation x's 3 - I suspected TIAs. He has lost a phenominal amount of weight (over 35lbs), mostly muscle mass in the short amount of time since this all started. On Feb. 10th (this past Thursday), he had a CT and then we went to his doctor. We told the doctor about the episodes he was having and the doctor asked a lot of questions, did an exam and said he was having TIAs and they wanted to move the surgery up to within 4-6 weeks because of this. The doctor told us to discontinue the blood pressure meds to help prevent the TIAs and gave us specific instructions to call the office immediately if it gets above 140/90. They asked us who was prescribing him all of the meds before all of this happened and we told them he was never on any meds before this. They acted like they were shocked, told us that they didn't normally manage meds and that we would have to get another doctor to do that - a medicinal/general practice/family doctor. Question #4: If they aren't comfortable managing meds, why are they prescribing them? Why did they give us the meds to start with instead having a doctor from the hospital do all of this? Question #5: We were told in the hospital that his blood pressure and his blood sugar issues (even sent him home with metformin, but told us no restricted diet was necessary) are all issues that are being created by MMD, then why wouldn't they be dealing with it since it is all one disease? We were also told he would be needing "long-term care" for this illness and that the surgery wouldn't relieve the headaches. Question #6: ???Long term care??? This led us to dig a little deeper and we found this website where we learned not only that it is a progressive disease (something you would think the doctors would have told us) but that there are often problems beyond surgery and that the symptoms often return after a period of time. We are also learning that he may need surgery again down the road. Question #7: Confused - if the surgery is to promote blood flow to the brain, why wouldn't that relieve the headaches? Question #8: We asked but did not get an answer to this question - will he still be at risk for seizures after the surgery? This is important because he has a CDL for his job. Question #9: This one led us to do more research on MMD which is how we found this website - what exactly is meant by long-term care? If the seizure risk, TIAs, high blood pressure and blood sugar are all issues created by the lack of blood flow to the brain, then will it not be corrected by the surgery? If no, why not? Will he have these issues along with the pain and exhaustion for the rest of his life? Question #10: Are there other people with MMD in the St. Louis area? The hospital and the doctor said that we are in one of the best places in the country to have to be dealing with this because they have dealt with this disease for a long time, but we have more questions than answers. It doesn't seem as though they are very forthcoming with information or that they are very cooperative with us. They haven't told us very much about MMD, what we do know we are learning on the internet.

As long as he is out of work, and I only work part-time, then we have almost no income and without SS disability, we are hanging by a thread. The doctor said we need to get a primary care physician, which means we need to get medicaid because the insurance he has is major medical, not regular insurance. To get SS disability, he will have to be off work for more than a year. We keep asking, but we don't know what his return to work time is and that is a huge issue for us. The doctor said it would take about 6 weeks to recover from surgery, but he will need long term care. Question #11: Anyone have any insight into this? Return to work time? Recovery after surgery? Deficits after surgery? SS disability? With his headaches being so bad, he is still sensitive to light and sound. Question #12: Will this issue be resolved after surgery or at least get better? With his work environment (he is a heavy equipment mechanic - construction mechanic), he is not going to be able to withstand the light and sound, let alone the pain in his head if it doesn't improve. On Friday, (the day after the doctor's appt. when we were told to d/c the blood pressure meds and call the office if his bp got over 140/90), his blood pressure went up. It started the day at 148/92 and stayed that way all day. I did what the doctor said and called the office. When the nurse called me back later that day, she said the doctor isn't comfortable managing his blood pressure meds and you will have to find someone else to deal with this issue! I was stunned. Why would you give him the meds if you didn't feel comfortable managing them? Why would you take him off of them with specific instructions on what to do if it got over a certain number if you didn't want to deal with it? I told her to ask the doctor what we should do since we haven't found another doctor yet, she said if it gets too high, go to the emergency room. I told her to ask the doctor what is too high in this circumstance. I know what too high is in normal circumstances, but this is different. She said if you aren't comfortable with it, then it's too high; the doctor won't advise to go back on the blood pressure meds and we need to find another doctor to manage his meds. I told the nurse to tell the doctor on our behalf that he is basically abandoning us and he should be ashamed of himself for doing so. I told her that he had no problem prescribing and managing all of these meds for 18 days while my husband was in the hospital and if he wasn't comfortable dealing with it now, then he had no business prescribing these meds to begin with and he should have brought in a doctor that could deal with it while we were in the hospital. Question #13: Is this normal to have another doctor dealing with the meds that are prescribed for MMD by the neurologist? It seems to us that would create an atmosphere for confusion and, given the total lack of communication between professionals here, a prime setting for catastrophe since blood pressure meds seem to affect TIAs as well as blood pressure. After I chewed the nurse up one side and down the other (I did tell her I know this isn't her fault directly, but I did have some choice words for the doctor), we finished on the phone and then about 10 minutes later she called back to say the doctor was ok with his bp, but if it got higher, we should think about going to the ER. I asked again, how much higher, but she said whatever I felt uncomfortable with - the doctor didn't say. What a relief !!! I was so waiting for the doctor to give a non-answer like that.

We feel confused and concerned, abandoned and a little lost. I am sure I will think of a dozen more questions after I finish posting this and will probably add to it, but if there are people who can answer any of these questions, any help will be greatly appreciated.

I can imagine your overwhelmed and lost and feeling abandoned and I don't blame you.  I have a 16 yr old who was diagnosed when she was 9 and had her surgeries in 2004 with Dr. Steinberg at Stanford.  She did quite well after, very minimal TIA's for the first year and no headaches.  She did not have a stroke prior to surgeries.  However last year she started having major headaches, we were then living in Texas and I didn't think the drs in Texas had a clue of what they were doing, since Oct. of last year we relocated back to Cali so that she can be evaluated/treated at Stanford again.  Tomorrow is her last follow-up test and from there we will know more of what is going on.

I don't really have any answers for you, but I want you to know that your in our thoughts and prayers!  If you ever want to talk, I'm happy to send my number to you or I can call you.

Hillary

I guess I'd like to start answering your questions by saying that everyone with Moyamoya is a little different.  My daughter never had a stroke but we found hers because she has had headaches since the 1st grade.  She is also 16 now...had her surgery Dec. 2008.  She still has migraines.  We have tried everything, prescription drugs, OTC, bio-feedback and the winner is BOTOX!  One thing you have to be careful of is OTC meds.  Learn your medication do's and don'ts.  People with Moyamoya shouldn't take anything that causes fluctuations in blood pressure or possible clotting.  Most people are put on a daily aspirin.  Most cold medications are a no-no as are birth control drugs for females.

As far as it being a progressive disease, getting surgery and long term care...it is progressive.  Without the surgery, as it progresses you risk stroke, bleeds etc.  the surgery doesn't "cure" the Moyamoya but it does get blood to the brain and most people do well after the surgery.  That is not to say that some still suffer some of the symptoms...TIA's, headaches etc.  Sometimes the headaches go away...the key is that everyone one is different.  they haven't been able to tell us why Destin still gets migraines.  I'm guessing they are talking about long term care if you don't have the surgery or they could just mean that it never goes away and you have to make some lifelong changes (aspirin, lot's of water, no SCUBA or SKy diving).

Everyone's recovery time after surgery is different.  Destin went right back to school after the holidays (she had surgery 12/22/08).  In hindsight we should have cut her schedule back.  she did tire very easily and she does have some minor issues with executive function so school was more of a challenge.  She's doing great in school now!

I do think you need to look for a good Neurologist that knows something about Moyamoya and most of all make sure you not only have an experienced surgeon but a anesthesiologist that knows how to treat moyamoya patients. (you don't want to be someone's guinea pig with this)  That is crucial with this surgery...they have to closely monitor the blood pressure with moyamoya.

I know all of this is overwhelming and very scary.  It's not to be taken lightly but it's manageable.  You have at least found people here that can relate and help you through it.

Donna