Hi my name is Carol I live in London and have a son Daniel who has MM.
He was diagnosed in Sept 2003 after suffering a massive stroke. In Nov 2004 he had right sided EC/IC, the other side should have been done but the doctors at Great Ormond Street hospital told us that he was ok and did not need the other side done. We were told that he has extensive narrowing on both sides!

Well 4 days ago he suffered a Haemorage and is till in hospital suffering from bad headaches, neck pain and vomiting I do not know what to do I have just dicovered you website and welcome and advice.
I have noted Dr Steinberg details and have written an email. I would like to seen him but I am scared if flying would cause more haemorraging.

Hi Carol,

Welcome to our MM family!

I’m so sorry to hear about your son, my heart breaks for you. I can’t stop crying just thinking about what you must be going through. God love ya! Your son will be in my prayers!

I’m not at all familiar with how much MM experience the doctors have in England, but I do know that experience is so very important in the management of this rare disease. Dr. Steinberg is who I believe to be the best MM specialist in the country. If you send him copies of your son’s films and records, he would give you his expert opinion and would probably be able to tell you if your son can fly. My niece had 4 massive strokes and the doctors here could not help her, so she was medically air lifted to Stanford, and Dr. Steinberg saved her life, so I know it can be done, but with all the other problems we’re facing with air travel at this time, I wouldn’t doubt there would be some red tape involved. I pray not!

We’ve had other MM family here form the UK that has had successful MM surgeries at Great Ormond Street. AndyMac had a daughter Emily, for one, but I haven’t seen him here on the website for so long. There are also some other wonderful people here from the UK as well, Jane...Chloes Mummy & louise_and_Lydia. They’re two I thought of off the top of my head. So you're not alone.

Please know you and your son are in our thoughts and prayers, and if you have any questions or just need to talk, we’re here for you and will do anything we can to help.

God bless,
Mar

Thank you Mar for your posting it was very encouraging and up lifting.
I have just come from the hospital and my son showed signs of improvment today, I thank God.

It is so frustrating watching him lying there, they said they have to wait for the blood to be reabsorbed before they know what the next action plan will be.
From what I have read here, they should have done the both sides at the same time and this would not have happened.
I'll just wait and see what tomorrow brings.

Carol,
Our thoughts and prays are with you, I cant really help with your situation because i know so little about the process, But wanted you to know that we care, and am please keep us posted on your sons progress and you treatment decisions
Mike

Hi Carol,
My heart goes out to you too :(I can't imagine what it must be like to have a child with this horrible diease and I know it affects everyone differently....I myself am a frequent flyier and it doesn't bother me to fly, however You would Have a lot longer flight than my 6 hours in the air and you should ask your Dr. about it or Dr. Steinberg (he would be the best one to ask) You are in MY Prayers,,,,,GOODLUCK and GOD BLESS
Elaine Calvert