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,:PAIN,MM,SURGERY RISK,.....ETC?
THANK YOU!
RENEE L
E-MAIL:Ledesma_R@msn.com

Renee,
My son had severe headaches before diagnosis and surgery. He was 11-yrs-old and would just tell us his head hurt. He was treated for migrains. Pre-diagnosis, when he said his head hurt he would point to the area affected by the MM, however we didn't know he had MM yet. After diagnosis we knew the problem but were waiting for the surgery. The doctor gave him Midrin for the headaches it helped some. Now he only has his headache when around someone that smokes, and it shows in the studies that smoke will cause migrains after surgery because it narrows the arteries.
You will have to get info on recovery from one of the adults diagnosed, because what I can tell it is different for children and adults.You are in my prayers, Rena

:(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, [smiley=wave.gif]

Welcome to the moyamoya family. I'm sorry to hear that you suffer with this disease and other problems as well. It sounds as though you're frightened and need some answers, bless your heart. Well, I may not have the answers, but we're all here for you if you need us in any way we can.

There are a couple different types of surgery for mm, which type are you having on June 1st? If you read the posts here, or many here who has had surgery will tell you that the surgery isn't painful. The headaches you're having are probably much worse, which is a symptom of mm and hopefully after the surgery you'll be a new person again and get the proper blood flow to the brain.
Some people are up and moving around the same day. In my opinion Renee, the surgery is crucial for mm, it will be well worth it, rather than taking a chance of a possible stroke. The risks well out weigh the consequences.  I urge you to read the many posts here where people have had the surgery, it may be comforting to know how well these people have done. This website is full of information to help you Renee, read all you can and ask all the questions you need to.

We have you in our thoughts and prayers. [smiley=hug.gif]

God bless,
Mar

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

Hi Renee!

Welcome to this site. I´m so sorry you are in pain and I think you´re very frightened.
My daughter Louise, 8 now but 6 years old by the time she was dx and treated with surgery used to have a lot of headaches telling me the head felt "to small" for her but 17 months past surgery she is fine. The headaches only appears sometimes when she´s exhausted and it is not nearly as bad as it used to be.
I know you´re scared but please don´t  be, the surgery will make things much better for you. Louises doctor told me it´s a fairly "simple" surgery so try to relax.
Take care, good luck and please let us know how you are, we will all be thinking about you and praying for you.

Annica