HI MY NAME IS RENEE AND I HAVE MM/ PLUS  NEUROFIBROMATOSIS1.IT WAS HARD TO COME TO FIND OUT THAT I SUFFER WITH NOT JUST ONE DISEASE but 2 OF THEM AND BOTH ARE RARE AND SOME DOCTORS DON'T KNOW ABOUT IT. I HAD PLACE MYSELF ON HERE BECAUSE I AM SCARED AND I AM GOING TO HAVE MY FIRST HEAD SURGERY ON JUNE 1ST ! I WANT TO KNOW WHAT SYMPTOMS DOES ANYBODY GOES THROUGH BECAUSE I WAS TOLD NOT MUCH BUT IT HAS BEEN GIVING ME PAIN, THEY SAY IT DOUSN'T CAUSE PAIN. THEY DON'T KNOW WHAT I AM GOING THROUGH. PLEASE IF ANYBODY DOES GO THROUGH PAIN PLEASE TELL ME !I GO THROUGH LIKE IF SOMEONE IS SQUEZING MY HEAD,I'M LIGHT HEADED,BLURRED VISION, BUT THE HEAD THE AREA WHERE THEY FOUND THE MM IS WHERE I HAVE SCUCIATING PAIN AND I HAVE TO DEAL WITH IT ALONG LITTLE CYST THAT ARE ON THE SAME SIDE AND SAME AREA EXCEPT FOR THE FACT THAT I HAVE NF ALSO BUT IN THE BACK OF MY NECK AFECTS TOO I GET SHARP PAINS,PRESSURE,PUSHING ON IT IT IS PROBALLY THE NF ON THAT PART BECAUSE OF THE CYST. I JUST NEED TO KNOW IF I AM THE ONLY ONE THAT GOES THROUGH PAIN WITH IT BECAUSE I DO GET SIMALAR LIKE HEADACHES BUT MORE SEVERE. I JUST WANT TO CONFIRM ON MY  BASICS THAT THERE IS "PAIN" THAT COMES WITH IT. PLEASE REPLY OR GET BAC TO ME ON MY E-MAIL. I AM 23 BY THE WAY AND THEY WERE SURPRISE I HAVEN'T HAD A STROKE. DOES MM CAUSE PAIN AND HOW LONG IS RECOVERY BECAUSE I AM VARY SENSITIVE TO PAIN AND SURGERY SO SINCE I NEVER HAD THIS KIND OF SURGERY ! WHAT IS THE NEDABLE? PLEASE I NEED HELP ON INFO,AIN,MM,SURGERY RISK,.....ETC?
THANK YOU!
RENEE L
E-MAIL:Ledesma_R@msn.com

Hi Renee, I feel so bad for you   This is tom G. and my son delt with severe chronic pain for 18 months and it was a horror ( not from moyamoya.
     I would avoid the drug route and seek out a good pain management bio feedback expert and a good neuro psychologist. 
     I don't know where you live but we have some good people here in NJ.
     I'm 48 suffered a major stroke but thank God have pretty much recovered and have never suffered any pain.
  God bless keep praying and stay in touch.
    
     Tom Gallucci
    

Hi Renee
I'm only seventeen years old and I was diagnosed at the age of sixteen. Unfortunately I can't help you on the question of headaches because all I had were TIAs and mini strokes. however I can answer your question about the surgery. My first surgery I had no pain whatsoever and I was out of the hospital within days. in fact my surgery was on Wednesday and that Saturday I was discharged. The same went for my second surgery, I was out within days. The risk involved in this surgery is the same as with any other surgery with few exceptions. Just as Mar said, the surgery will be extremely helpful and will change your life from one of uncertainty to one of certainty.

It's a great thing that you have found out about this site. It really is extremely helpful and the family will answer any questions you might have. Please feel free to ask and tell and post away.

Freckles