Hi everyone

i'm relatively new here.  i had the STA-MCA bypass surgery on September 11 2007.  i've been feeling great and feeling stronger every day.  i went for my follow up appointment on October 23.  i thought because i was feeling so good that i would get a clean bill of health.  they had done a ct scan the day prior to my appointment.  just a few days before my follow up i noticed some drainage coming from the lower part of my incision.  i didn't think anything of it because when i had the staples removed the nurse told me that there was some fluid underneath.  i was also feeling great.  well, as soon as my surgeon saw it he admitted me to hospital immediately for further test and the possibility of surgery.  initially they thought it was superficial and were going to send me home with a picc line and antibiotics for six weeks. the surgeon came in on Friday morning and told me the radiologist who read my MRI called him at home late the night before to say he thinks the infection may have travelled to my brain.  so i went in for surgery on Friday Oct 26 to clean it out.  they had to remove a small piece of my skull as there was infection underneath.  i was very lucky as it had not travelled any further.  i was in a week and just returned home yesterday.  i will be on a picc line with antbiotics for 6 weeks.  i have to be fitted for a helmet because of the removal of the bone and until that is fitted approximately a month from now i'm not allowed to leave my home.  apparently about 1% of the patients with bypass surgery will get an infection.  so not only do i have moya moya (rare) but now i'm in the rare category for infection.  i do consider myself very lucky that it was caught early and that i have a surgeon who has good instincts and takes no chances.  now after all that has anyone else had infection after surgery?  i've read many posts  on the message board and always find coming here reassuring and helpful.  i definitely don't feel alone in this.

Thank you
Smitty39

Lore

thank you for your reply.  i think i will buy that lottery ticket.  unfortunately it's been a very long road.  after i had my stroke they thought i had MS for six months until they finally did an angiogram that discovered it was moya moya, which no one at that point had really heard of. once again i was lucky because i didn't have surgery to treat it until almost a year to the day of my stroke  and i remained very healthy, walking daily and doing yoga 1.5hrs per week.   then i was referred to the only doctor within an hour of me that knows about moya moya.  he trained for four years under Dr. Steinburg in California.  other than a few melt downs which is important i've remained positive for the last 13mths.  that's why this message board is so helpful.  everyone is so positive that you can't help but be positive.  i still have to go back for a third surgery to put in a plastic piece where the removed the skull.  after that i'm determined that it's smooth sailing.  i hope i get some replies.  even if i don't just sharing the experience has helped.  thank you again.

Debbie (smitty39)

lore

thank you so much for your words of encouragement.  i know you speak from experience and i've learned how important family support is.  i also realized that a huge part of how you recover is attitude and i've lived by this.  i also made a very conscious decision that i would not live with moya moya but it would have to live with me.  i tried very much not to let it impact on my life too much.  i even coached my sons soccer team this past summer. i couldn't run and kick the ball around with the team but i was definitely  able to give direction, encouragement and cheered them on.  in fact our team came first in the league.  i unfortunately still have not regained the full use of my hand from my stroke over a year ago but no one notices. once again thank you. i'll probably be posting more as i now have six weeks of staring at the inside of my house.

Debbie

thank you for the information.  i'll definitely have a conversation with my surgeon about his experience with this.  he spoke like he has done this before as did the nurses talk like they've seen this before. that said i have not asked about his experience.  he did advise me that they would not go ahead with the third surgery until he was sure the infection was gone.  i will keep you posted.

thanks
debbie

Hi

so far it is only on the one side.  my doctor has advised me that a year from my fisrt bypass i will have another angiogram and ct perfusion.  then from there he will do another in a year then 3-5 yrs.  he feels if the the other side is still good at that point he'll "cut me loose".  i haven;t had any numbness or tingling since September 19 just after my surgery.  and in fact i had only a couple of episodes of numbness and tingling in my face and hand since my stroke in september 2006. and that was over six months after my stroke which to be honest with you really scared me at the time because it hadn't happened in such a long time.  right now even though i've hit this bump in the road i know and believe that it is smooth sailing ahead.  i do believe in the power of positive thinking and it's ability to help heal.  Thank you for your interest it really helps to know you're not alone.  This is a great forum especially for someone who is relatively new to MM i've learned so much.

Debbie

Debbie,
Our prayers are with you as well. if you have a normal infection why are you seeing an infectious disease Dr.? My sister had to meet with the same kind of Dr's from the CDC, because this infection is dangerous. I am glad you do not have marsa but they also told my sister that the bacteria came from the skin. but they cleaned it out and it got worst i have reservations that the bacteria crawled up under the skull piece. I feel the bacteria in my sisters case was introduced by the saw they used to cut the skull bone, causing the bone to be the source of the infection. Just an opinion but if it was on the surface of the skin with antibiotic cream and cleanings kept as sterile as possible how do you get such an infection of the bone? Was your infection in the bone flap. I am assuming it is because they removed it. My sister has no bone and an indent in her skull and they left her that way and said there is nothing they can do. Due to financial problems she can not afford to go to Boston or california and see the specialists in the field. I hope in a few years we can save up enough to get her some where where they can help her.we wish you the best of luck please let us know how it goes!! Linee might post herself, she has some problems with these things but she will try. It might do her good to talk with you because she feels like she is the only one with this problem, and i believe you and her just might be!!
God bless you and yours.
take care of yourself!
Amiee, Linee and Molly

Hey Smitty,
    Did you see the report on MRSA on CBS news tonight?  That is #@*&^ scary!  The only problem I had after my bypasses was an infection around the injection site from my anti-coags.  
Best of luck and love.     Newt