TexasMom,
Welcome to the family! I am sorry to hear your son is going through the rough patch, but you are here and have the MM diagnosis so your answeres are just a post away.

First you will need to find a neurologist that has a background in MM.

Secondly This MM expert neurologist will be able to know which surgery will help your son the most. Yes, surgery especially after the multiple strokes. What the surgery does is supplies the need blood flow to the weakened by MM spots in the brain to possibly prevent future strokes. There are different kinds of surgeries that only the MM Expert Neurologist will be able to tell you the one(s) your son will need to have done.

My Personal story: I had one stroke which lead to my diagnosis of my MM. My neurologist did the STA-MCA bypass and the EMS surgeries done at the same time.  What worked for me may not work for you son's MM. Everyone is different with different lasting symptoms.

Stay Strong and Knowledge is Power! Please feel free to ask anything.
Becky

Thank you for the responses.

We have been told that our son has "virtually no carotid arteries".  Does the surgery you have described work for cases such as this?  Forgive me is I sound ignorant...I really am ignorant when it comes to this diagnosis.

How do we get him to a place that can help?  He is in a top rated children's hospital, and the neurologists and neurosurgeons there have told us they have treated moyamoya before BUT not a case this severe.  We have asked about transfering him to Boston (at our own expense if need be) and were told that we should trust that they are seeking advice from all over the country.  Should we just take it upon ourselves to send his records, scans, etc to Boston, Houston, etc?  PLEASE advise us.  We are desperate.

Thank you, Mary.

So do we just ask for all of his records and send them to Boston ourselves?  He is still inpatient and they are telling us he may be there for several months.  Should I just call Boston?  Again, I appreciate your help.

Texasmom, welcome to the mm family. Am sorry to hear about your son. You can get your son's records and all test's and MRI's put on a disk and send to Boston. The hospital should be able to do this. Mine did. You also might want to try and call because I hear Dr. Scott is very good. I am alot older than your son.I was diagnosed at the age of 52 and had EMS surgery one year later. I am now 58 and the surgery has given me 6 more year's. You and your family are in my prayers, Sharon

Hi Texas Mom and Welcome!

I'm sorry to hear your son is having to endure so much at such a young age but you have come to the right place.

My brother had a dissected right upper internal carotid artery. It was laying in his neck and was described to me like a wet roll of paper towel. His other carotid was 90% blocked. He had stroked several times and was having multiple TIAs daily. In 2005, I was told he was too far gone for surgery. I found Dr. Steinberg at Stanford through this site and he agreed to take a look at my brother and the rest is history. My point is there is hope. My brother was in bad condition and I personally thought he would not be a candidate for MM surgery and I wasn't certain he would survive the trip to California but he did and he had two direct bypasses and is alive and doing well six years later.

Dr. Scott at Boston is an excellent MM specialist. My brother couldn't be treated by Dr. Scott simply because my brother was too old. Otherwise, we would have gone to him because Boston is much closer than Stanford.

I agree with the previous post to call Dr. Scott.

Please know we are here to support you in any way we can so please ask questions.

I wish you and your son the very best and please keep us posted.

Lore   

As of Friday, the team at the hospital said they are gathering all of our son's information to send to Boston and Stanford.  We are hoping to get that ball rolling, as it is extremely frustrating to wait and wonder every day if he is going to have another stroke, or worse.

Today is his 19th day in the hospital, and so far he has not yet had an angiogram.  We are told that they need to wait until 4 weeks after his last stroke to obtain an accurate angiogram.  He has had countless MRIs and MRAs, as well as blood tests.  I believe I mentioned before that he has also been diagnosed with Factor V Leiden deficiency, and we are told this has complicated his case further.  The hemotologist has told us that at this point all we can do is try to regulate his medication and pray.  He is going to physical therapy daily, but we have been told that over exertion could trigger another stroke so he is being monitored closely during therapy. 

I would like to hear from any/all of you if this sounds like the normal course of treatment.  Is there really nothing else we can do right now other than pray?  I firmly believe in the power of prayer and believe God has already worked through our son in the previous weeks, but I also don't want to sit back and put too much trust in the doctors if there is more that should be done at this point.

Two weeks ago we were on the verge of having to decide whether to allow the docs to drill burr holes in his skull to relieve the pressure (a procedure that the docs were almost certain he would not survive at that point).  Now we are in "wait and see" mode.  We are tremendously grateful that his pain has decreased and that he has made progress.  We just want to be certain everything that CAN be done IS indeed being done.

Thank you all for your input.

  That's great that your Dr.'s are reaching out to the specialists. Most likely the surgeon who does your daughter's surgery will want to also do the angio. Kathleen did not have her angio here she had it in Boston about a month after her stroke.Dr. Scott wanted it done in Boston Children's Hospital. Have your Dr.'s given you any precautions such as not allowing him to hyperventilate or become dehydrated? Also is he on asprin?  I'm not sure what your son's complication is but these are the things we were told to help prevent strokes while waiting for surgery. Keep us posted. I know some days feel unbearable just worrying about another stroke but your family is in my prayers.
Mary Grace

Texasmom, I'm so sorry to hear your son may have ahd another stroke. I looked up the Factor V Leiden since I had no idea what this meant as far as complications for your son. The way I understand the blood is more likely to clot? this does sound like a very seriouse complication for a MM patient. Does your son take blood thinners? 
   I remember how  going through this with my daughter tested our faith. We had so many people praying for her.I will keep your family in my prayers. Please keep us posted.
Mary Grace

Update...latest MRI showed 2 new strokes. March 8, 2011 we had a healthy son without a care in the world and now he has had 5 strokes?!  Hard to wrap your mind around this.

They are stopping all his blood thinners in hopes of getting an angiogram tomorrow.  The neurosurgeon will review the angiogram with the neurosurgeon at Stanford and they will decide if he is a candidate for surgery.  If he is, they will transfer him to California and operate almost immediately.  If he is not a candidate...well let's just pray that he IS!!!!

Praying for your son today that all goes well with the Angiogram and that he will be a candidate for surgery at Stanford.
Mary Grace

we are praying i got all of my family in fort worth praying for you good luck god bless and you shall prevail

  Hoping and praying for some good news today.
Mary Grace