Hello Everyone,
It has not been the best day for me and my family.  I had my bypass surgery this past April at Stanford with Dr. Steinberg.  I have been doing OK since the surgery except for fatique and low blood pressure.  I have had three infections on my head where the surgeries were done.  I also had a second surgery to have a meningeoma (benign tumor) removed a week after the bypass surgery.  Today i saw a vascular neurosurgeon in St. Louis at Washington University.  He has spoken with Dr. Steinberg and feels that the bone flaps from the previous two surgeries are infected and need to be removed.  I have struggled with energy levels every since surgery.  Now we may know why, but his requires me to have two additional surgeries.  One to remove the bone flaps and another to have synthetic bone put in 6 months from now, after they are completely sure that the infection is gone.  This not at all what I wanted to hear.  As my husband and I were driving the 3 hours back home I kept asking myself why.  I know that the next two surgeries are much easier than the last two, but I just was not anticipating anything like this.  I cried half the way home. 
I know that God has been with me every step of the way and that he will continue to be at my side, I just wish that there was something else they could do to treat the infection.  I have been  on antibiotics twice  for several weeks at a time, but the infection keeps coming back.  Dr. Zipfel says that is because the bone is the source of the infection. 
Has anyone else had anything like this happen to them?   Dr. Zipfel is willing to coordinate everything with Dr. Steinberg, which makes me very happy.  He says that they have worked on other cases together and know each other well.  I called Teresa at Dr. Steinberg's office and she called me back a couple of hours later.  She is going to talk to Dr. steinberg and call me back on Monday.  I am going back to St. Louis on Monday for an angiogram and then surgery is tenativly scheduled for Monday September 21. 
Please keep me in your prayers, and if anyone else has had any problems such as this please let me know and let me know how things worked out.

Tracie

I forgot to add that I had the last surgery to replace the bone flap in April of 2008 and was only in hospital for one day.

Debbie

Tracie,

I am sorry to read about your troubles and will definitely keep you in my prayers.   

Best regards,

Jennifer
Mommy to a 6 y/o with MM
www.caringbridge.org/visit/rubymaejingli

Tracie, I had my aneurysm surgery after I fould out I had mm. That was in 2002 and then bypass in 2003. I am going to the Washington University-St.Louis in Otcober for an MRI and PET scan. You are in my prayers.
Take care and godbless, Sharon

Tracie,

You are in my prayers. I too almost followed the same path. Multiple trips to the emergency room, 2 hospital stays one of which was 2 weeks in the hospital flat on my back with a spinal drain and a pic line with multiple antibiotics, the infection finally cleared up. Surgery was my next step to remove the bone flaps. However, here in Kansas City they don't communicate with Dr. Steinberg very well so you are blessed and that is where I was stuck in the hospital. You are definately in my prayers. Anything you need. It will get better.

Reagan

Good Evening All,

I wanted to thank everyone for their prayers and encouraging words as I ventured into my 3rd surgery within 6 months. 
Surgery was last Monday Sept 21st and all went well.  I was in the ICU after surgery for just 8 hours and then out to the Neruosurgical unit.  I was then discharged the next day at 6pm, just 34 hours after surgery.  I am home resting and feeling GREAT!!!!
I will be on antibiotics through a special IV called a PICC line at home for a couple more weeks but am gaining strength every day. 
The infection was very superficial so they did not have to remove the bone flaps.  The surgeon surgically debreided, or cleaned out the incisions from my first two surgeries and then closed me up again.  Lucky for me the infection had not invaded the bone yet, quicker recovery and less time getting antibiotics.  I feel better than I have in months and am looking forward to getting back to a normal life just in time for the holidays. 
I will return to the doctor in 1 more week for the sutures to be removed and maybe they will take the PICC line out.  If not then I will have the PICC line for an additional week. 

I had this 3rd surgery at Barnes Hospital in St. Louis with Dr. Zipfel from Washington University.  I know that people in the past have talked about Washington University and the research they are doing.  Just to set the record straight, Dr. Derdaine is a neuroradiologist that is conducting research pertaining to improvement of imaging to diagnos and treat moyamoya disease.  They are not with holding surgical treatment to those that want it and qualify for it, ie... no other major health concerns that would delay surgery.  Dr. Zipfel is the neurosurgeon that does the bypass surgeries and sees patients with moyamoya weekly.  He has performed many bypass surgeries and knows Dr. Steinberg personally.  Since Dr. Steinberg did my bypass surgery and the surgery to remove my tumor Dr. Zipfel consulted him before performing this last surgery.  I would have loved to have gone back to Stanford, but I live in central Illinois and it is not financially feasible for me to travel to California more than once a year.  Having a neurosurgeon and neurologist within 3 hours of home has made my treatment much less stressful. 
Dr. Zipfel is a wonderful neurosurgeon and has the same philosophies about treating this disease as Dr. Steinberg.  Dr. Zipfel's nurse is Brenda and she has been very helpful as well.  If anyone is looking for a surgeon to treat their moyamoya disease please do not hesitate to contact Dr. Zipfel and his staff at Washingtom University in St. Louis, MO.  You can contact them by calling 314-362-3577 or click on the link below. 

http://wuphysicians.wustl.edu/physician2.aspx?PhysNum=3199

Dr. Zipfel did an angiogram before surgery to ensure there were not any problems with blood flow and my graft looks good.  He sent the images from the angio to Dr. Steinberg.  The two physicians have worked together to ensure the best possible out come for me and I am forever greatful and thankful for their efforts.  They are truly two great doctors and men. 
So if anyone out there has been hesitant to contact Washington University please do not hesitate.  We need good qualified neurosurgeons throughout the US to help us battle this rare disease. 

Again, thank you all for your prayers and words of encouragement.  It helped me to face yet another challenging time in my life. 

Take care and you are all in my prayers!!!

Tracie