Happy to be Alive

The story of Sandra

As a kid I was what they said very clumsy they said make sure she wore high top sneakers. I was always tripping over my feet and even broke my front tooth doing so.

Things where very strange I sometimes had like a vertigo and only once did I have a major headache for 13 days but no explanation. Then I hit age 38 and I had a stroke and was told oh your carotid is blocked and doctors said there was nothing I do. I pushed hard to walk again but the tripping got worse and hip got more pain.

12 yrs later I  asked to see neurology again and I  could even walk my ankle was in pain I seen a student who you could see the compassion he had but when the doc came he never entered the room he stood at the door and told me my stroke was so long ago and pulled the studend.

November had come along and I was having a stroke and was flown to our main hospital and I had the best care. That arrogant doc came in and told me I would be having surgery this time I threw him out but I had to go to a rehab this time around.

When I got home I was sent to see a wonderful neurosurgeon from Austria but after the one I did my research and had a family friend check him out and he said I had the best. He told me about my Moyamoya and that surgery was my option and wouldn’t be pushed into it. I had my surgery on 6/29/2020.

Remember the problem with my leg, well after I had surgery I was great and finished the seizure meds yeah but walked in my door the leg stiffened my ankle twisted and I hit the floor I ended up back in surgery for another bleed but Dr Griessenaur and his team had me. I fell however because they were seizures I have been having for all these years and I am now 52. I am walking better and haven’t fell since. 

Never underestimate what your body can do and never write it off. Moyamoya can do strange things to you from the tips of your toes to the top of your head

 

*Find others with Moyamoya disease on RareConnect, the online platform for people affected by rare diseases