Wednesday, May 14, 2014

Successful Brainstem Neurosurgeons

In the past year, I have been researching, following other people brainstem surgery recovery, and asking fellow survivors with a great outcome,  whom their surgeons is/was.  This is the list of Neurosurgeons that I came up with.    These Neurosurgeons have several Brainstem surgeries under their belt, and the patients that I read about, or follow the recoveries, are not only "alive", but are home, and have a very good quality of life.  When faced with a brainstem surgery, nobody expects to come out completely like before, with no deficits to deal with at all, but to be able to go home and become independent again is more than some of our "local surgeons" told us.   My Neurosurgeons here in Cincinnati gave me a 1% of never dying or becoming severely handicapped or a vegetable, and a 95% chance of becoming totally dependant, nursing home material, IF I was ever to have the surgery.   Finding Dr.Spetzler, or a confident, competent, surgeon, turned that 95% completely around!!  

That said, if for some reason  you cannot get to Dr.Spetzler, here are other surgeons around the country that you can see. These surgeons are amazing.  Dr.Spetzler has the biggest success as to be able to remove the entire Cavernoma with little permanent damage. He is simply that good, because that is all he does.    The other surgeons are very successful at accessing the brainstem, removing all or most of the cavernoma, and people go on to recover pretty well.    PLEASE do not just sit home and wait for your brain to bleed and leave you handicapped or dead simply because YOUR neurosurgeon cant help you.  Be  proactive and get to one of those surgeons! !


Barrow Neurological Institute, St. Joseph Hospital ,
Phoenix, ARIZONA
**Retiring 2016) Recognised as the best Neurosurgeon in the world, originally from Germany**

San Francisco, CALIFORNIA
**is to take Dr.Spetzler direction position at Barrow when Spetzler retires**

Dr Steinberg 
Stanford School of medicine,

Dr. Arthur Day
University of TX Medical school,  
Houston, TEXAS

Dr Christopher Ogilivy 
Beth Israel hospital,

Dr David Newell
Swedish Cherry Hill,  

Dr Robert Solomon
Columbia University Medical Center,
New York City, NEW YORK

Dr. Eric Nussbaum
John Nasseff Neuroscience Specialty Clinic,
Saint Paul, MINNESOTA.

Dr. James Evans
Thomas Jefferson University Hospital,
Philadelphia, PENNSYLVANIA

Dr Mark V Reichman
Neurology Surgical Associate
Salt Lake City, UTAH


Mr Neil kitchen
University College University Hospital,  
London,  ENGLAND

Miss Mary Murphy
University College London Hospital, 

Mr. Ravi Gopal Verma 
M.S. Ramaiah Medical Hospital, 

Bangalore, INDIA

Please, if you have had brainstem surgery, and you would like to suggest your Surgeons because you are satisfied with your recovery, Please email me at

Saturday, May 3, 2014

Updates on Drew, Nicole and Crystal

I have tripled the good news today!!!

Drew was discharged from St.Joseph and despite his legs being numb, he can walk!! I cant believe this kid has had 3 brain surgeries in one week, one in the brainstem, and 2 in the ventricle.  That alone is amazing... but wait.... he looks like he has not even had surgery yet, let alone 3! Look at him!!

I LOVE seeing a picture of Dr.Spetzler with the people he saves.  I so wish I could have a  picture with him. He is THE celebrity of all celebrity, come on!!   Drew is going to start outpatient PT  and OT, 3 times a week.  He has been reviewing his school work about an hour a day.  He gets very exhausted very quickly, with is so so normal.  His vision was not affected at all. He has some coordination problems, and he is numb from the waist down, but Dr.Spetzler is very confident that this is only temporary.

Crystal.   My poor Crystal.... As you know, she needed to go back on a breathing tube the day after the surgery. She was put on a ventilator and eventually a trach.  Its has been such a challenging 2 weeks.  Most of the time, daily update were positive, always a step forward , even if small.  But at the beginning of this week, she has kick some ass big time!!!  I was so happy one morning when I realised that she posted on her facebook all by herself.  Gosh even if  it was hard to read! haha ha  Been there done that! hahaha Dear ol facebook.  Later that day, she posted this picture of her walking!!     In the next 3 days, her posts has been more and more consistent and without any typos! She is a pro!

Yesterday was the surprise of all Surprise when her mom posted this:

"AWESOME NEWS on Crystal!!!! She is moving OUT OF ICU!!! WHOOPEE!!!! We've got a VERY long road yet ahead, but it is TOTALLY possible that we may be able to head home within 2 weeks!!!! I'm at the hotel to shower & get back to stay with her thru the night (she can't talk or call for help)!!! So...this is short, I'll update on the overall status tomorrow...her room number will be 6N47 (subject to change, but if it does, I'll let you know). And YES TO FLOWERS!!! (Several of ya'll have wanted to send her some to perk her up but she couldn't have them in ICU...NOW SHE CAN!!! Gotta run!!! THANK YOU FOR YOUR AWESOME PRAYERS!!!

YAY Crystal!! She wants to go home to her little girl so bad, and I have no doubts that she will!!  She still has a trach, but has been able to breath on her own without the ventilator for 48 hours now.  I am not sure what is going on as far as therapy etc.  I really hope that she can get into the acute neurological rehab there at St.Joseph.  That place is simply amazing. I said it before... even with all my limitations... this was the best weeks of my life!!   Its amazing to find yourself unable to feel, or move or walk, or do anything, to walking out of there!!!!  I will keep you updated on her rehabilitation plan. So far, I have not heard that she has major physical limitation and her Neurological assessment were great!!! 

That brings me to sweet Nicole!!!  She still has a trach and peg in her stomach for feedings. She was in intensive care for the last 6 weeks, but she was finally moved

to a regular room on Thursday once she was breathing on her own. She is at Miami Children's Hospital.
!!  These news cannot be more welcomed.  Its so difficult to imagine your loved ones like this... but I know you understand how awesome these progresses are.

As you can see (or read haha)  these are all awesome, awesome news, and once again, prove that no matter how many doctors try to keep things realistic and tell you that there are no ways you can survive a surgery of this magnitude without major deficits, or that you can survive a horrendous brainstem bleed/stroke, there are NEVER no way that you cant prove statistic wrong!!!

It is so uplifting to follow these people's journey and witness the victories. Its a long journey back, but I have no doubts that not only Drew, who had no complications whatsoever after 3 surgeries, but Crystal, and Nicole, will recover and astound Doctors just the way I did. The power of a hopeful, happy mind is absolutely amazing.  

I thank you all SO much for keeping these brave people in your thoughts and prayers.  You are the BEST.