Gina,
That is such a hard question to answer. It seems as though everyone has a different experience with MM, that is one reason it is so hard to know what to expect. I am sorry your experience is so bad, I wished there was something I could tell you to try that you haven't tried yet, but it sounds as though you have kept on top of this with the doctors.

Have you checked with the hospital about a chronic illness support group? If they don't have one maybe you can see what it would take for you to start one?

I will keep you in my prayers, not only for your MM, but also for you to find support.

Rena

ginabean wrote on Apr 15^th, 2005 at 1:21am:

Hi Ginabean,

From all the research I’ve done, I’d have to say, IMO, that the long-term outlook for those who have had successful surgeries are GREAT, once the brain is supplied with the proper blood flow. BUT, not all people who have mm disease have the same problems or prognosis. In other words, it depends on each individual’s clinical condition, and other factors, such as... the degree of blockage, the damage resulting from strokes, the proper surgery for their case, etc. I could go on & on with the many different reasons for complications that can occur, such as you had with the subdural hematoma, but it doesn’t necessarily mean the long-term outlook is grim at all. Here’s a for instance… one of our MM members had the direct surgery done by an excellent neurosurgeon, but one NOT experienced enough with mm the disease, and a long story short, the artery used in the bypass was too small, and never supplied the brain with the proper blood needed, so nothing but complications and many problems after. In fact, they were told to get their affairs in order, nothing more could be done. BUT they sought a second opinion with a "mm specialist", and there was, thank God, an answer, and now doing well, and they have an excellent future, but see, it wasn’t necessarily the mm progressing after their surgery, but rather never getting the increased blood flow needed in the first place. I’m not implying this is your case, I don’t know your specifics, but I’m only saying, never give up girl, and if you’re having continued problems, perhaps you should consider a second opinion, what could it hurt? Perhaps you have already, but I felt I had to mention it, because we’ve seen a second opinion save lives many times!

When I first heard the words moyamoya over 2 years ago, I was told it was a deadly brain disease with no hope, but I know for a fact now that’s so untrue!! So my biggest lesson learnt the last few years with this rare disease is… don’t always believe what some doctors tell you, and to seek a mm specialist. They deal with it on a daily basis and give you results that some others can’t.

I’m sorry you’ve had to go through what you have, but please know that’s why we’re here, to lend support and friendship. You’ll be in my thoughts and prayers.

Mar

Hi ginabean, my name is mark, and I am writing this for someone who is recovering from surgery and is not able to write this herself. Her name is Lisa, and she was diagnosed three years ago with MM, and she had one unsuccessful surgery two years ago. She was told that she could not have another direct surgery and she had all but given up hope. But this past Wednesday as she was being wheeled into surgery, the doctor told her that he may try doing another direct bypass, as well as the indirect. He did do both and he said that he thinks this will do the trick. He stated that he could see the flow of blood to the needed area and that with doing both direct and indirect that it maximizes the flow of blood to the brain and increases Lisa's chances. Lisa is now home recuperating and she wants you to know that she is truly touched by your story and she can relate to what you are going through. One of her favorite sayings is "it ain't over til its over". She encourages you not to give up hope and to exhaust every means of finding out the right thing to do. She as well as me, send you our prayers and hope that you may find the answers you seek. Lisa would very much like to talk with you when she is able, so keep an eye out for her trying to get in touch with you through this board. God bless you gina and keep the faith, Lisa and Mark.

Welcome Bobby, to our mm family!

I just wanted to say hello and thank you for your post. Although I don’t know the specifics of your fathers case, (like the damage that resulted from his stroke or the vascular problems, etc.) I’d still like to add, generally, with successful surgeries and the proper blood flow to the brain, along with mm management, there is no reason your Dad couldn’t go back to work and lead a productive, happy life with moyamoya. Of course, regular follow ups/check ups and staying hydrated and following the obvious is a must as well, as with any disease/disorder. To prove my point, a note of fact that’s amazing to me is, DJ was up putting this website together in intensive care after his second surgery. Each person bounces back differently, but never the less, I’ve seen so much success and wanted you yo know that.

Take care of your Dad. My thoughts and prayers are with you both.

Mar

I have not had the surgery. I was diagnosed in July 03. The one thing I can say is never give up, never give up!!! Keep yourself surrounded by positive, spiritual and motivating people. Never give up!!!!! 8)

ggonzo,

My personal suggestion would be to get a second opinion from a doctor who deals with Moyamoya on a more regular basis ASAP!  Moyamoya IS a progressive disease and if your husbands arteries are as bad as his current doctors say they are, then the risks of something major happening could be much sooner, rather than farther down the road.

I don't say that to scare you, but it sounds like your husband is fortunate nothing major has happened so far.  There are far too many people on this site who's doctor's told them, or their families to wait, only to suffer major, irreversable damage while in the holding pattern.

Please, seek a second opinion from a Moyamoya specialist soon!

My 

DJ

Thanks for everyone who answered my post.  I'm usually a very positive person, but I was really, really depressed the night I posted.  I've been suffering from depression (have most of my life) and an adjustment to my antidepressant medication has helped - I'm seeing my shrink again tomorrow and I think I'm going to have him up the dose one more level.   I'm still not feeling back to my normal, base self.  Still weepy, irritable, trouble sleeping, etc.  Better than I was, but still not "there" yet.  Depression is a god awful thing.  It grips you and is insidious and deadly.  And MM is hard enough without depression rearing its ugly head.  It paralyzes me.  Someone asked where and when I had my surgeries.  My first surgery was 11/21/2001 at Methodist Hospital in Minnesota.  It was a direct bypass on my left side.  My R internal carotid was 100% blocked.  My surgeon is Dr. Eric Nussbsaum of the University of Minnesota.  My neurologist said she recommended him over even the Mayo Clinic; she would send her own mother to him!  My second surgery was 1/21/2002, after 2 months of solid narcotics every four hours round the clock, plus Oxycontin because the pain from the headaches from the subdurals caused by the first surgery was so severe.  The subdurals were drained and an indirect bypass was done over the top of my skull. I was in the hospital for 10 days, lost 15 lbs, was so sick from the anesthesia, morphine drip, dilaudid, you name it, I though I was going to die.   My third surgery ( the emergency surgery) was performed 2/21/2002, where the subdural was drained and my pain immediately relieved.  The CT scan showed more stroked deep in my brain, however, so my surgeon wanted to move up my R side direct bypass to May (I had wanted to wait until September to give myself some time to heal.) So May 31, 2002, I had my R side direct bypass.  Dr Nussbaum got a very small artery on this side, he was not happy with it but it was all I had, so he went ahead with it.  So I had 4 surgeries in six months.  And I was so sick with the anesthesia every time - nauseous, dry heaves, etc.  Even the antinausea drugs didn't work.  My last surgery was an indirect bypass done on the back right side of my head on September 9, 2004.  That one went well, not so sick this time, only in the hospital for one and a half days, the surgery only lasted 45 minutes or so, so I wasn't under for too long.  Dr. Nussbsaum is a neuro -vascular surgeon, who has done hundreds of MM surgeries, and I trust him implictly.  My neuroligist, Sandra Hanson, just switched the scope of her practice as of January 1 to stroke and vascular patients only.  She is a top notch physician, and I have heard nothing but high praise for both of them.  Dr N is BRILLIANT.  My last angio showed my L bypass and the first indirect bypass doing extremely well; the R side was open, but not doing very well.  I was having some tingling and numbness in my left hand, which was why my hubby and I, along with Dr. H, decided to do the last indirect surgery.  I will have another angio next Septembe to see how that bypass is doing.  It is hard to tell, but sometimes I think the numbness is better.  We'll see in a few months.

Since the subdural "incident". I have developed chronic migraines.  Dr. H did an EEG? of my brain, and it was abnormal.  I am currently on two anti seizure meds - Topamax and Neurontin, so help "quiet" the overexcitement in my brain, and therefore help prevent migraines.  I also have Fiorcet for pain control, which I  am only supposed to take twice per week - which I am able to stick to.  I've been going to a pain clinic, doing physical therapy, I even did biofeedback, which I found enormously beneficial, and occupational therapy, which I will be learning Qigong and other relaxation techniques.  Slowly, they are getting better. 

I'm going to see Dr. Hansen May 4th, and I'm going to talk to her about what to expect in the future as far as MM.

Thanks to everyone.

SEEK THOSE 2ND OPINIONS!  MM IS NOTHING TO "WAIT AND SEE"!!

hugs,

gina bean