So, back in September, my sisters posted on this site regarding my husband. I have been reluctant to post because I'm not sure where to begin. My husband suffered a massive 45cc hemorrhage of the left basal ganglia on Sept. 19th. The Drs gave a less than 10% chance of survival. He was intubated, paralyzed on the right and completely aphasic. After testing, he was diagnosed with Moyamoya. One of the Moyamoya vessels had ruptured and caused the hemorrhage.
Now, 8 weeks later, he is alive, regaining movement in on the right side, relearning to walk, and relearning to speak. He understands most things we tell him although he may not remember it later and he often says one thing while meaning another. Tonight he scared some friends of ours by telling them that one of our young daughters had eaten poison. He probably was trying to tell them that she had been sick this week and was on medicine.
The Drs say it was very fortunate that he is left handed. It's that fact that may have spared his speech and comprehension from being fully destroyed. He's in a rehab facility now getting the care he needs to become functional. It's not clear yet what his disability may be although they view him as a miracle. The sheer fact that he survived is a miracle much less that he is regaining function.
I got copies of his scans and plan on getting in touch with a Dr here locally who is listed as a Moyamoya specialist. He's a world renowned neurosurgeon, from what I've heard. No...it's not Dr. Steinberg. I just don't know at what point he would even be able to undergo a surgery for the condition. The other complication he has developed is severe blood clots in all of the primary veins in both his legs. He had an IVC filter placed as a preemptive measure before the clots formed and unfortunately they did form. Of course, there is nothing they can do for them except those nice, tight stockings. Another hemorrhage at this point would probably be fatal. It would most definitely be fatal with blood thinners in his system.
So far he's been hospitalized for 8 weeks and has several more ahead of him. We are self-employed and uninsured. I am looking for ways to fund his future surgery. I have a couple of prospects, but I'm really hopeful that the surgeon will at least consult with us. I really don't know if it's just the left side that he needs done. I don't know if the did the arteriogram on only the left side because, at the time, they were just looking for the cause of the hemorrhage or if they routinely do both sides of the brain. I don't think they did the right, so who knows, he may have the same MM over there.
The future is very uncertain right now. We're just thankful that he's alive and getting the rehab he needs. Hopefully, he'll recover soon enough to have the surgery he needs before something like this happens again.

Hi, ohwellowell and welcome to the mm family. Am very sorry to hear about your husband. A am glad you have found a neurosurgeon who is a Moyamoya specialist. I know that Becky said Dr.Steinberg is the best, and he is but some of us don't have the insurance to cover the surgery.  I had my EMS surgery in 2003 at the University of Iowa Hospitals. I am still here so the surgery did help. You and your husband and family are in my prayers. 

Sharon

I personally did not go to Dr.Steinberg either but since it sounded like your questioning the diagnosis from the neurologist you have now. I was lucky I live in MN where I had the Mayo clinic and I had multiple nurologest from there to review my case, then I choose the one with the most experence in preforming the surgery.

I suggested having a second opinion to see if they are saying the same thing. You don't have to go to Dr.Steinberg but I have just heard from others on this site how wonderful Dr.Steinberg's team is and how others have been in a similar situation where they are reaching for answers.

I also understand not everyone can afford Dr.Steinberg's team but I am positive there is something (fundraising, ect) that you could have the second opinion with his team and may find out that your current neurologist is right and then stay with your current doc.

The most important thing is to not "wait and see". Get the second opinion and see if they match. Please keep us informed with his progress.
Stay Strong,
Becky

Ohwellohwell,

I am so sorry to hear about your husband as well as the pain the family must be going through.

I don't have much to add concerning doctors as I'm sure you've done plenty of research on your various options.  However, I would like to add that if your husband has any children or relatives, have them checked for MMD.  It was the loss of my sister from MMD hemorrhaging that led to the early discovery of my daughter's MMD. 

Our prayers for your husband and family