I would like to know how it goes. Ups downs, good days bad days. My wife Pam is 2 years diagnosed, STA-MCA on both sides. She is struggling mightily. This disease shows no mercy.

Gosh I'm so sorry ot hear she's struggling so much. I don't care for a spouse but I do care for a child. She was 5 at the time of diagnosis but she's almost 14 now. We struggle with the results of her strokes. She still has good and not so good days (fewer not so good than before). She needs lots of sleep to ahve a good day. If she's tired she can be a "bear" and she doesn't focus as well. I assume it's a tired that we don't even experience. She also is affected tremendously by the heat. she becomes exhausted very quickly when she's even just a little too warm.
Did your wife have strokes? Has she had any follow-up testing since the surgery? Wish I could help more... Maybe someone else has more to add. Keep us posted with any specific questions you may have.
Mary Grace

Pat,

I am caring for my husband, newly diagnosed 1/3/11 after a hemorrhagic stroke and ICU for 18 days. His surgery is scheduled for 3/14/11 unless something changes. Our lives have been turned upside down and along with the financial devastation, the physical aspect has taken a toll on both of us. We have just learned that our doctor was not very forthcoming with information regarding this disease and his future; so we are just trying to get our heads around it so to speak.

Like your wife, my husband has good days and bad days. We are just working together day by day to get through this, but he has made the decision not to let this get him down. He just has to take things as they come and keep a positive attitude. We are in St. Louis, MO and are hoping that the doctor we have is at least as good as he thinks he is. Where did your wife get her surgery done?

As far as day to day, we are learning more and more about moyamoya with each passing day. I have been keeping a journal from day one of his disease, not just for myself, but also for him. There is much of the first 20 days of this he doesn't remember or doesn't remember correctly. I think it will also help him to see what we (his parents, our children and myself) have been going through with him.

If you would like to keep in touch with me, send me a message and I will give you my email. I would hope that maybe we can be a support for each other, even though I know you have been going through this much longer than we have. I do have a lot of questions if you wouldn't mind my asking, we are very hungry for information. My thoughts and prayers are with you both. Michelle

Hi Michelle,
I have been reading your post 'wow' and see that you are dealing with the same issues we dealt with. Lots of opinions, but not much good info. I'm a little pressed for time right now, but I will say, that the number of symptoms presented by this disease lead to so many other possible diagnoses many physicians tend to go in another direction away from MM because of rarity for one, and lack of experience. The pain he is experiencing is very real and needs to be addressed. Regulating blood pressure with meds is a delicate dance at best. High bp will cause his headaches but his headaces will cause stress and raise his bp also. Low blood flow will do it also. Lots goin' on here. My wife's diagnostic process began to accelerate after discovery that both of her carotids were 100% clogged and one vertebral 60%, the other 40% along with severe migraine-like headaches and TIAs. Still it was beleived that it was plaque/cholesterol related until scans with contrast showed the veinous/arterial regeneration 'puffs' in her brain.

Her surgery was performed by Dr. Robert Spetzler @ Barrow Neurological Institute in Phoenix. Interesting, the time frame for your husband's surgery. Spetzler was looking at 2 days after diagnosis for my wife. We waited about a week so we could get relatives notified etc. etc.

Question #6: Yes it is progressive and can also attack the aortic arch. Not trying to alarm, but inform. Headaches and extreme light sensitivity are there also.
Plavix is essential for my wife due to the advanced clogging and to enhance what little blood flow that does get to her brain.
I need to set up another email account for this site and I will get it to you.
How old is your husband by the way?
Hang in there. Knowledge and strength on your part are of great importance.
Pat

Hi Pat, There is so much that we need to know and between insurance and the doctors, we are really having a rough time. We asked the neurosurgeon how much experience he has with MM and we have not received any response. This is very disconcerting and makes us wonder if we should trust him with doing the surgery. We will be seeing a PCP on Thursday to help manage the meds that the neurosurgeon will not deal with.

As for the wait on his surgery, he had massive bleeding on his brain from the hemorrhagic stroke and the damage it caused was pretty bad. He was in ICU for 14 out of 18 days when it happened. They had to do a ventriculostomy on day 7 to help the cerebral spinal fluid become regulated again and most of the time in the hospital, he doesn't remember. There was a lot of swelling and a lot of damage to the top of the brain and they didn't want to risk surgery with his brain in that shape, so they decided that it would be best to try to let his brain heal some before doing surgery which is another trauma to his brain.

Will the sensitivity to light not go away either? What about the sensitivity to sound? I know now that we are going to have to deal with the headaches as well as other things that go along with this. We just want to know what we should be expecting and what to look for.

My husband just turned 39, how old is your wife? We live just outside of St. Louis, MO. Where are you located? We are trying to learn as much as we can about MM as we can, it's just so much at once.
Michelle

Michelle
Makes sense on the wait. My wife Pam is 54, diagnosed at 52. Light and sound sensitivity is still there for Pam. Probably will be from now on. We are in Phoenix. I feel that if we were anywhere else in the country, she would have died. Between the Arizona Heart Institute and Barrow Neurological Institute, we both feel like they saved her life. Google these places. The founders of both of these institutions personally worked on my wife, the best in the world, in my opinion. Stanford University Medical has a good program also. I believe the founder of this site had surgery at Stanford Medical.

In my opinion, a neurosurgeon familiar with this disease is very aggressive in getting these surgeries done asap. I don't know who you are seeing and I wouldn't know if you told me. Research, research, research. The STA-MCA surgery video is available on line. If you watch that you will get a grasp of the amazing delicacy of this particular procedure. The reason for these surgeries is to basically bypass the clogged arteries to restore blood flow to the brain. The temporal arteries that are incorporated into STA-MCA are not as big as the carotid arteries but better than nothing.

Success and a good prognosis is relative to damage done. In Pam's case looking back, she was having was having TIAs since she was around 42. The general age of onset in adults. Very rare for women anyway. We live in Phoenix, were very active, going to concerts, sporting events and such. She fell frequently, started having trouble with stairs occasionally at football games, standing on slopes and maintaining her balance, those types of things. Many more instances to mention. We drink and tailgate and have a good time. A lot of these things we wrote off to maybe too much to drink, not eating, the heat at games.

Bottom line, this disease was chipping away at her for 10 years. Halloween night 2008 she collapsed while handing out candy. She was fine after about 30 minutes. Same thing happened again the next evening. Same result. The search for help began. About this date 2 years ago we started to make some headway on a diagnosis. And here we are today.

I lost a paragraph on Dr.s somewhere. Anyway, I have found Dr.s that are a little older and more experienced deal with MM better. Not to say the young guys don't know what's going on. Always ask if they have even heard of MM. You will be astonished how little is known.
Take care,
Pat

Pat,

We really didn't know to ask the questions about experience and familiarity with MM of our surgeon. It wasn't until we were discussing all of this with our doctor on last Thursday and he said something that came as quite a shock to us. He said that Tony would need "long term care for this disease". Among the other things that we discussed, my husband and I agreed that we didn't understand what he meant and as we asked more questions, it became very obvious to us that we were not told everything we should have been told about MM. We asked about his experience and are very disconcerted that we haven't been given an answer. I don't think I want someone who doesn't have any experience with it opening up his skull and tickling his brain. My husband doesn't agree, he is fine with the doctor we have, but I just don't want to take that chance.

We did luck out by finding a PCP that is familiar with MM. She knew enough to tell us when we made the appointment that we need a neurologist for this disease. We have our first appt. with her on Thursday morning.

My husband has a physical therapist coming 3 times a week because he has lost so much muscle mass and so much weight. I am hoping this will improve over time, but half the time when she is supposed to come, he is in so much pain with his head that she can't do much.

We are actively trying to find another doctor in our area that is familiar with MM and can do the surgery in case ours doesn't have the experience with it.

Michelle

Michelle,

Therapy seems very ambitious at this time. It sounds like he wants to be up and in the game. Gotta take it easy though. This upcoming surgery is a bear.
Pam needed to rest and eat small but regular. 'Ensure Plus' is a great supplement for good nutrition without much effort. Pam was drinking 6 strawberry flavors a day. Wal Mart has a house brand, as does Walgreen's, CVS and most supermarkets. Safeway, Ralph's, Albertsons. Kind'a pricey but worth it.

Look into state funded medical care for help. Arizona has it. We had to get in the program, there was no way we could afford everything that has been done. If he can't work (duh) you probably can qualify. Lots of paperwork but worth it. Medicaid funds our program here.

Pat