Matthew  had his surgery on Aug 4. His surgery failed..it clotted within the first 8 hours and he had a stroke as a result of the failed brain bypass.  Has anyone else had this happen? Now he has a severe infection (I have been calling about the drainage for weeks now) with large clumps of "yellow like jelly" literally squirting out of his head/incision site.  They are going to do a catscan and mri to make sure it has not spread into the brain.  Has anyone else seen or had anything like this happen after surgery?
I read everyone's posts and I am so happy for others that their surgeries went well etc... but I never see anyone talk about the people with Moyamoya who had a failed brain bypass and now feel totally helpless.  We were told that the disease has now spread to the other side of Matts brain :( He has 3 blood clotting disorders and it is due to these that they say his surgery was not successful.  Any information would be great. ;)

so sorry to hear what you are all going through. I know it is agony. My daughter had 2 surgeries,  a year or so apart. She had a stroke after each surgery. IT was tortuous being in ICU wondering what the outcome would be. She also has a low Factor IX issue. is on meds for stroke and seizure and has TIA's.

After her 2nd surgery, her scar was not healing, was weeping etc. eventually it cleared but it was very stressful. AT one point they were going to do skingrafting.

My daughter just had a recent MRI that says she is stable but she still has hyperventilating, crying and weakness on occasion (like the first day of school) and we are trying to have more testing done. She is doing quite well otherwise, except for these episodes and some involuntary movements which we are still trying to figure out.

I know of another case of Moyamoya in a child, where there was infection and fluid build up and they put in a shunt to drain the fluid.

I vividly recall the ICU days...........and know how stressful it can be. Hopefully they will find some answers to support your son. I'm wishing you all the best though I know that's not much comfort right now.

take care!

Dawn

Thanks Dawn for the post :)  Not that I am happy or glad that you had problems...however...there is something reassuring to know we aren't the only ones...and that it does get somewhat better.  One correction..this is my husband and not my son.  They plan on doing surgery to clean out the infection which seems to be swelling in his face and moving down to his ear and jawbone.  They have a pic line in and are treating for MERSA until the results come back with the exact culture diagnosis.  They did an MRI to see if the infection has spread through the skull into the brain.  They said we would discuss that if we need to cross that bridge.  So tonight we are in a holding pattern...surgery to take place tomorrow...exactly how extensive is still unknown.  He is on a heprin drip and that will be stopped in the am so that they can do surgery tomorrow.  Thanks for your input as well :)

Shari

Wishing your husband good luck with his surgery today. take care and keep us posted!

Dawn

Shari,

Donna here, from Tampa.  Are you going back to TGH or Shands?  Let me know if you need anything.  Hope all goes well tomorrow.

Sorry Donna it has taken me a bit to be back on line.  We have been at TGH the last week.  Matt was just sent home with a pic line and on vancomyacin and another push antibiotic. Plastic surgery assisted Dr. Agazzi in the surgery and they reopened Matt's head and had to clean out the infection and do a wash.  Plastic surgery then stitched him up this time...no staples...  Now his right leg is 3 times the size it should be...had several tests done today for DVT...but they were negative.  This may sound good..except it doesn't answer why his leg is so swollen all the way to his toes that he can barely walk. ;(  Feeling very frustrated.  Anyway...that is our update.  Going to talk to primary tomorrow about what do we do now.  Talk to you soon

Shari

The same thing happened to me (failed bypass surgery and other complcations besides infection). Also I had much severe infection (drainage for months). Now I am still struggling with the consquence of it.

I went to a hospital months after infection. Thanks GOD and thanks the doctor's team in this hospital for what they have done and what they are going to do for me.

I suggest seeing a doctor as soon as possible. I will keep praying for both Matthew and myself.