Hi Todd,

Your Dr. must say when it's time for the surgery but as MM is a progresive disease, the time for surgery is usually once is diagnosed. Everyone here will recomend you to ask for a second opinion and we can give you as much references about neurosurgeons as you need. You have found a great place, it's full of people ready to listen and help ...

Please let us know how we can help you.


Stay strong,

Paula

Hi Todd! Welcome to our MM family,

I don’t know how much you know about MMD so I want to explain a few important things about this rare progressive disease that affects the blood supply to the brain. No medication stops the arteries from narrowing and progressing, so therefore every MM patient is at risk for a stroke or hemorrhage without surgical intervention to try and help supply the proper blood to the brain. The progression differs from patient to patient, some faster than others, but surgery is the ONLY treatment for MMD.

It’s hard to say when surgery is best for each patient with so many individual factors involved, no two cases are alike, depending on where the blockage is and to what degree, and many other factors, but I can say, without treatment, a patient's clinical condition will worsen and eventually stroke. It isn’t a matter of IF he will stroke but when. The symptoms you describe sound like TIA’s (mini strokes) which is usually a warning of a stroke, and an 80% blockage is very serious, so it’s vital that your doctor have MM experience to help direct you on the best path for your case ASAP.

Unfortunately you will find a lack of real MM experience in much of the medical community, so it’s important you learn all you can about this disease, so you’ll know if a doctor is taking you down the best path for your particular case. Delay in treatment is the major pitfall we see. That should raise a red flag of their experience in treating this rare disease, so don’t be afraid to be aggressive and keep looking for the best doctor for your situation with as much MM experience as possible, if that’s the case.

You are considered very fortunate if you are diagnosed with MMD before having a stroke. Sadly, most are not. If it were me with a loved one with an 80% blockage, I couldn’t get surgery soon enough, but with a qualified, MM experienced surgeon.

Will keep you both in my thoughts and prayers.

Mar

My daughter is 35 and has had 7 strokes. She had numbness in her right arm and the Dr told her she must have hit her funny bone. If we had only known she was having TIAs, she may not have had that 1st stroke.
                 many prayers, Christie

Todd, welcome to the site.  My daugher has MM.  The first neurosurgeon we spoke with told us that there was a possiblity we could wait  to have surgery because she was getting enough blood from the collateral arteries that had formed to supply blood to her brain.  I found this site.  I sent her information to Stanford, Dr. Steinberg, and Emily got her surgeries before she had strokes.  I would agree that the thing to do is gather information and take action.  Ask your doctor how often they deal with MM.  There is a page on this site where people talk abou the surgeons they have gone to and the results they had.  Make sure to check that out as well.  My daughter had the MRI then MRA then SPECT scans here at home.  THen she had an cerebral angiogram at Stanford.  If they want an MRA I would do that asap.  It shows the veins more clearly than the MRI.  I wish your partner nothing but the best and let him know that there are many people out here who care and have experience and will help as much as possible.   -Audrey

First of all, thank you EVERYONE for taking the time to post responses to this fo me.

Audry, when you say you sent infomation to Stanford, Dr. Steinberg, exactly how did you do that?  Do you have contact info I could use to send the CD of his MRA results.

By the way, two of his MRAs can be seen here:
www.toddwess.com/MRA/MRA1.JPG
www.toddwess.com/MRA/MRA2.JPG

Thanks, and I'll keep everyone posted.
Todd

Audge wrote on Aug 6^th, 2009 at 9:38pm:

Also, here’s Teresa’s email: (Dr. Steinberg’s nurse) teresab@stanford.edu

Dr. Steinberg’s Profile: http://med.stanford.edu/profiles/Gary_Steinberg/

Mar

Hey Todd!!  I guess you got the phone number to Dr. Steinberg's office from the other posts.  I actually spoke to Jill the first time I called there.  (I was very emotional.) She gave me an address and I overnighted the cd's and all medical reports I had on my daughter so they could evaluate her asap.  I think they have their meetings at the beginning of the week to discuss potential new patients.  Since you have your partner's online that will be even easier!!  Keep the momentum going no matter which doctor you choose!!!  Please keep us posted.  We all get attached to everyone who comes on here and shares their story.    Audrey

Well, I thought I came on here by buy some more t-shirts and bracelets (I get asked for them a lot) and thought I would post an update.  The last I wrote was in August of last year.

Ken has had 5 strokes since then.  He had the bypass surgery done on October 5th of 2009 by Dr. Vivik Deshmukh out of George Washington University Hospital.  They were not able to do the direct bypass, so they had to do the indirect bypass.
Ken suffered the first stroke eight days after surgery, and the second, much larger one, 4 days after that one. 
He lost his right side completely.
Since then, he had a long stay in rehab, his anterior cerebral artery also collapsed, so they did burr holes (8) all along the top of his head, he had three additional strokes and a subdural hematoma (sp?)
He is at home now (we had to sell our house and get a one-story house closer to the hospital).  He has PT, OT and ST three times a week coming to the house.  He is able to walk unassisted, has some use of his right hand and arm, and his speech gets better each day.
Does anyone else have any experience with the indirect bypass method?
Todd

Hi Todd, and welcome to the mm family. I had a stroke in 2002 but not as severely as Ken. I had indirect bypass surgery in 2003 at the University of Iowa Hospital's. I will celebrate my survival of this disease for seven year's in next June. Do not give up. There is still hope. My prayers are with you and Ken

Hi Todd,  My daughter had the indirect.  It worked well.  It takes a little longer to grow a new blood supply than the direct but it was the only way to do hers because of the size of her arteries.  Please keep us posted on recovery.