Wednesday, April 23, 2014

Nicole, a beautiful 15yo girl needs our prayers


Please pray for this beautiful girl. Her parents were told "inoperable" several times and she did not have surgery (yet). She is now fighting for her life in ICU, after suffering a major brain hemorrhage due to her brainstem AVM. Her mom has been following this page since the beginning and we have talked often. My heart breaks so much as they are now going thru what her worse fear was a year ago... As you know, most people with this condition will never "bleed", but this sweet girl did.... Please pray for her. Here is what her mother wrote: 

"This is my beautiful daughter Nicole. She is 15 years old. At age 6 she was diagnosed with an AVM in the brain stem, that was her first bleed. Her second bleed was at age 8 and after that bleed she had Gamma Knife. She didn't have another bleed until age 13 but she had her 3rd and 4th bleeds 7 months apart. Nicole always recuperated after all bleeds with very minor temporary issues and soon resumed a normal life but on 3/22/14 Nicole had a 5th bleed and it was a big one. Neurosurgeons had to do an emergency cranial decompression to save her life. She has now a trach and still depends on the ventilator. Yesterday they removed the EVD from her head. She is able to swallow but for now not able to eat or drink by mouth because it is not going to the right place. She is so depressed and I pray for strength to be able to support her. I know God is with her and will guide her through this and heal her. When she gets better I want to take her to Dr. Spetzler and see if he can help her. Thank you all for your support and your prayers. God bless you and all your families."

We have 2 beautiful persons fighting for their lives in ICU with Trach and Ventilator right now, Crystal and Nicole, due to this awful condition, that all of us didn't know about until it happens to us or someone close to us.  My heart breaks for them and their family. Please pray that Nicole gets strong enough soon to receive Dr.Spetlzer care.





Monday, April 21, 2014

Dr.Robert Spetzler, The Best Neurosurgeon in the world.

THIS IS NOT DR. SPETZLER'S  MEDICAL CONTACT PAGE!!!

I receive email every week from people all over the world asking me medical advice. 


IMPORTANT NOTE: Several people have left comments in the hope of getting direct answers from Dr.Spetzler himself. This is not a way to contact Dr.Spetzler. This is just a page talking about him. If you wish to directly contact Dr. Spetzler, Please call here.  

  • (602) 456-7805 




Dr. Robert Spetzler was named #1 top neurosurgeon again for 2014 and made the cover of Top Doctors.




Interviewer: You were named “Best Brain Surgeon” . You know that makes you a rock star, right?

Dr. Spetzer: "Although I have been privileged to take on the most difficult and challenging cases from around the world, it is the rare poor outcome, despite our best efforts, that keeps me from being a “rock star.” However, the patients who entrust their life to our care are, in my mind, the real “rock stars.”

And THAT is why he is amazing... no matter how great you are at something, never let praises make you believe you have achieved the top, even if the whole world think you have.

Here is the whole Interview: 


NEUROLOGICAL SURGERY
Dr.Robert Spetzler
Med School/Year Graduated: Northwestern University School of Medicine, 1971
Years in Practice: 37
What inspired you to become a brain surgeon?
My first health care experience, as a 5-year-old child in Germany, shaped my views about medicine. After contracting tetanus, I was one of the first to receive a new miracle drug – penicillin – for what had been a usually fatal disease. After months in the hospital and the subject of much medical attention, I was convinced that I wanted to help save the lives of others.
One of your breakthrough aneurysm removal surgeries required inducing hypothermia and clinical death in the patient. Describe it.
In order to successfully treat otherwise inoperable brain aneurysms, we helped pioneer a surgical procedure at Barrow [Neurological Institute] that involves cooling the body to 15 degrees centigrade or lower, eliminating blood flow from the body and stopping the heart. At such low temperatures, the brain and other organs can survive without harm for as long as 60 minutes – enough time to clip and deflate the brain aneurysm. We have conducted more than 100 of these surgeries, by far the most of any hospital in the world.
What is the most significant advance in your field in the past 10 years?
There are many and include molecular profiling to be able to provide personalized treatments tailored for particular diseases... and the evolution of microsurgery.
What do you do to keep your own brain sharp?
There are many things I do to keep my mind sharp. I am an avid biker, skier, swimmer and marathoner. The daily interactions with our... hardworking residents and colleagues at Barrow also keep me on my toes.
You were named “Best Brain Surgeon” by the Phoenix New Times, and were profiled in Der Spiegel. You know that makes you a rock star, right?
Although I have been privileged to take on the most difficult and challenging cases from around the world, it is the rare poor outcome, despite our best efforts, that keeps me from being a “rock star.” However, the patients who entrust their life to our care are, in my mind, the real “rock stars.”



There are no doubts that Dr.Spetzler is the best of the best, but there are others that are amazing too. Here is a list of very successful neurosurgeons that operates the brainstem.    HERE 

Thursday, April 17, 2014

Updates on Drew and Crystal 6 days post op.


For those of you who do not use facebook, my apologies for not updating you sooner. I just assume that everyone has facebook... Please do email me at lisanneklute@gmail.com if you ever want some news that are not being posted here. Facebook is quick and easy and I can do it thru my phone. I have been updating every day thru my "That Brain Fart" page.


Drew and Crystal both had surgery last Friday, April 11th.  Both surgeries were very successful! Dr.Spetzler removed both brainstem cavernomas successfully with no complications.

Crystal:  She woke up talking and could feel all extremities. She said "God is good!" and everything was as good as it could be.  Later that night, she started having trouble speaking. She also had a lot of sleep apnea, which is not good at all when you are recovering from Brain surgery.  As hours passed, her speech got worse as well as other neurological deficits that started popping up, and her difficulty breathing.  MRI showed some spinal cord leakage and a drain was put in.    This is a facebook post from her mother:

"About 4am eastern time Sunday they rushed her for a Stat CT of her head. Neuro dr just came by & feels good with results from their perspective. I asked for a chest X-ray. Her work of breathing is becoming an issue. Got her back on CPAP with 50 percent oxygen bleed in & her respiratory rate is slowed from 40's to about 28. Oxygen level is holding @ 95. My concern is her wearing herself out. Her chest sounds junkie. She is resting right now. PLEASE keep her in your prayers"


A few hours later, she posted this one: 

"Crystal is having some complications and has been reintubated and on the vent. They have taken her for another CT. They feel the swelling in the brainstem is the root of the problems. I'll share info as I know more. PLEASE KEEP PRAYING for my girl. Love to ALL of you. They're taking GREAT care of her."

Needless to say, we went from crying tears of joy that the surgery went so well and Crystal was awake and well, to crying tears of worry!!    Crystal amazingly strong mama has been posting one or two updates a day since. Here they are:

Sunday Night (2 days post op) :
"no changes since going on the vent. Resting & healing are the focus right now. They are taking great care of our girl. I'm going to TRY to rest now but I promise to keep ya'll updated. Love ya'll!!!!!"
She is completely sedated so she can rest, pain free, and heal."


Monday (3 days post op):

am: "Crystal is still on a ventilator. They did an MRI and it looks good. She is stable but they are concerned about fluid leaking to her spinal cord. If it continues they will have to drain it, but they do not expect any issues. She is still sedated."

"Not a lot of change. She is still on the vent with a little less oxygen being added (down from 60 to 50 percent). They did place the lumbar drain. PLEASE don't stop your prayers!!! Had to tell Sara today that Mommy isn't coming home tomorrow as originally planned. She took it quite well. I didn't!!! I hung up and sobbed....my heart hurts for my babies!!!! Gotta take the rental car back tonight. Then catch a taxi back here. This should be fun...NOT!! I'll update ya'll tomorrow or if there is any change."

pm: " again...rough day for her lungs today. She is in ARDS. BUT they have been very aggressive in heading it off. It's very difficult to fully explain but the WONDERFUL news is that she is responding favorably and resting well now. She is far from thru this but we are headed in the right direction!!! Soooo Whoo-hoo!!! I'm gonna TRY to crash in a few minutes but I'll keep ya'll posted. PRAYERS are working!!!!!!


Tuesday (4 days post op)

am: Crystal rested well last night. Good news on neuro! The spinal fluid leakage is doing well with no more seeping from incision site!!! Respiratory not as good. They've cranked up the oxygen to 80 percent. Bronched her with VERY little return & what they DID get isn't good. MY worry right now is the development of A.R.D.S. (Acute respiratory distress syndrome (ARDS) is the sudden failure of the respiratory (breathing) system.)Anxious to talk with pulmonologist for his thoughts...Love ya'll!!!!"

pm:  again...rough day for her lungs today. She is in ARDS. BUT they have been very aggressive in heading it off. It's very difficult to fully explain but the WONDERFUL news is that she is responding favorably and resting well now. She is far from thru this but we are headed in the right direction!!! Soooo Whoo-hoo!!! I'm gonna TRY to crash in a few minutes but I'll keep ya'll posted. PRAYERS are working!!!!!!


Wednesday (5 days post op) 

am: Great news!! "They just did a chest X-ray. Right lung definition and left Upper!!!!! We're going in the right direction!!!!! Prayers are working ya'll!!!!"



pm: ""Crystal has had a good day! (yesterday) Slow but steady progress!!! Yay!!! They have been weaning her Fi02 (oxygen) & have it down to 50 percent. They'll probably let her rest there tonight and shoot for getting to 40 tomorrow. Once there they will probably start to wean the PEEP (pressure maintained in the lung at the end of breathing out). They need to take it from the current setting of 12 down to 5. I expect that will be tomorrow's goal...we'll see. PLEASE keep praying!!!!! Love ya'll!!!!!"


This is where we are now. Today is Thursday :)  I wanted to keep you up to date, just so if you do not use facebook, you know what is going on and you can pray for our girl!

That brings me to Drew!! Drew has had one heck of a ride.  After surgery Friday, he woke up sick and in pain, as expected. However, he could move all his extremities. He has had pins and needles in his arms and his legs were numb, but he was able to walk to the restroom just a few hours after surgery, which is remarkable!!

However, Before his brainstem surgery, it was found that he had a second CM, in the right ventricle. 






The ventricles are filled with cerebrospinal fluid (CSF) which bathes and cushions the brain and spinal cord within their bony confines. So obviously, when operating in the Ventricule, the risk of fluid leaking, and bleeding, is higher than other parts of the brain.  Dr.Spetzler strongly recommended that they remove the 2nd Cavernoma found while they were there in Phoenix, and even tho other surgeons could do the operation, Dr.Spetzler was going to do it. 




Drew' second brain surgery was set for Monday.  He was scared, in pain, and depressed.  That is a lot to take for a 15yo who doesnt fully understand how amazing he is doing!  Its hard to understand how great you are doing when you feel this horrible!!   However, the second surgery was a success.  Dr.Spetzler was able to remove the cavernoma and avoid leackage. Drew woke up finding his legs even more numb than they were, but no new deficits at all!!  Once the surgery over, he could focus on getting better and put all that fear of those surgeries behind him!!


Drew, the day after his second surgery. 
Not so much...



His mother called me last night... Well, after a post Op MRI yesterday, Dr.Spetzler saw that there is a THIRD cavernoma... This third one is actually a bit deeper than the second one, in the ventricle and was not seen at the previous MRI , because it was covered by that second one on top. So... he is strongly suggesting surgery to remove it, because Drew is strong and the wound is fresh. They would not need to saw the skull again, just remove the same piece. It is deeper and will carry a bit more risks than the second surgery. Drew still cant feel his legs and is scared. Please continue to pray for Drew and his family. The roller coaster they have been on his scary and totally draining!! On the positive side... its amazing that they are there right now, under Dr.Spetzler's care, and making sure that Drew has a bright future. Nobody would have ever known about this hidden monster if Dr.Spetzler was not amazing at what he does.


This third cavernoma is deep in the ventricle. If it was ever to be left there and bleed, this could put him in a coma instantly. It is so difficult to put him thru a third surgery, but it would be worse to do nothing at this perfect time to do it, just to have it worse later.  


Drew was in a very happy mood Tuesday and Wednesday before finding out of this 3rd upcoming surgery. The stress and fears were finally down and he could focus on what is ahead.  


He has been so strong and his body has responded so incredibly well those the surgeries, that it can only keep bring him more miracles. It has to.  SO please continue praying for him and his family.  


All this said, surgery is tomorrow for Drew. I cant imagine the roller coaster of stress this family has gone thru.  Please keep praying, and share with your friends and loved ones.  We need an army of prayers warriors.  




Wednesday, April 9, 2014

Drew


This may come as a shock to you, but...I am actually very torn and sad that so many people have found a new chance in life thru finding Dr.Spetler thru this blog...  

It makes me cry, every time...  Simply because I am so heartbroken to meet more and more people that were just sent home to deal with seeing themself, or watching someone they deeply love, become more and more disable, until their brain basically bleeds to death. I want Dr.Spetzler, and any other qualified brainstem neurosurgeons, to be known, right away, easily. It breaks my heart that it is so hard to find them.... yet I am thankful that so many people have found answer thru this page.  I am truly humbled by this. Nobody even knew I had this until all hell  broke loose and I ended up in the hospital, more than a Year after I was diagnosed. I was private, and didn't understand that people do care, and want to pray and support you. I didn't want pity, or come across as wanting attention, so I didn't say anything... I was wrong.   The support I received from so many people the minute I shared my struggles was and still is overwhelming.  Sharing my struggles, educating myself in this illness, and annoying people on forums and support page by insisting that it is NOT "Inoperable" have made people mad, but have helped more.  

This brings me to Drew.

I know what you are thinking... 2 people??  In one day??

YES!!   Not because I think you can, or I can, but because I know that God can!

Drew is a smart, handsome and athletic 15yo boy. His mother contacted me last month thru this blog. She too, had find my blog, that then led her to Dr.Spetzler.  See what I was saying? Why couldn't she just google up "Brainstem surgery" and have Dr.Spetzler pop up, why? Why did she have to dig for my blog?  That is what I am telling you people, I don't have any  merit on this, These people who find me, ARE the Hero!!!

When she first emailed me, Drew's mother shared with me that he has had 2 bleed in 9 months, and even the local hospital have offered to do the surgery.  That to me, was the key information to encourage her to pursue surgery with Dr.Spetzler.  Neurosurgeons just do NOT offer this surgery. Its always "inoperable" until the last resort.  Drew is doing fine right now. He recovered from his bleeds, just as I did the first 2 times, but 2 bleeds in 9 months, we all know that a third bleed is inevitable, and that is why he was offered the surgery locally .      

Are you ready for this? In her email, Drew's mother told me where they lived, without knowing exactly where I live.  They are right here, in Cincinnati, Ohio!!    We were able to meet in person 3 days after exchanging emails. What a blessing. We talked for 2 hours and it went by like 2 min. I am so thankful to be right here to offer support to this family.     Are you ready for more?  Drew's surgery was scheduled for... Friday, April 11th, at 9am!!  Same day as Crystal!!!  




Now, if you guys are confused as to how is it possible for Dr.Spetzler to perform 2, 5 to12hours long surgery, within 3
hours from each other?  This answer will answer another question as of why is Dr.Spetzler the best at removing these brainstem tumors? Because that is the ONLY thing he does!!!   Dr.Spetzler  can have as many as 5 O.R opened at the same time, at an interval spaced out perfectly enough for his teams to do all the work , just enough to let him do the most complicated part. He will spend 1-2 hours doing just that, then leave his team to "close", which allow him to move on the next OR to repeat the hard part again. That is ALL he does!!!  Surgeons here put him down to me, calling him a clown... saying "what is this, a drive-thru brainstem surgery?" and you know what? they can call it how they want, it works, and he saves lives all over the world, while they tell people to go home to die.  So there!!!  I was amazed that Drew and Crystal are the same day.. since they both live at different  part of the country, both found him thru this blog... They will also meet and be able to support each other. Oh I wish I could be right there with them!!!   However, I will be right here for Drew and his family and support them in any way they need.

Drew is a healthy 15yo.  Unlike all of us adults that chose to have this surgery now in order to avoid severe handicap or death later, Drew is just a boy and could not make that decision!  He is a healthy boy that loves to play sports, play video games and hang out with friends.   He is too young to totally go into this completely ready for it, but too old to be totally innocent.   I have NO doubts that this is the best decision, as I would do the same for my own child, but my eyes still fill up with tears and my heart worries at the thought.  I KNOW he will be fine and recover, but I also know how challenging it is, for him, and his family!

I may not of been worried to wake up not being able to move, paralysed, barely being able to see or hear, and feeling like I was floating or majorly drunk all the time (You can laugh that's ok)  but I am an adult, and I knew it was coming.  The fact that Drew recovered SO well from his previous bleed is SO encouraging. I am very confident that he will not have any permanent deficits. I have learned thru this that the better shape you go in, the better shape you come out.  They are even making studies on this.  For years and years, they have been waiting for patients to be on the verge of death, already disabled, to have this surgery done. They are finding more and more that people recover so much better if they are not already disabled!  

Drew is healthy, but he has what is called "Low Factor 7".  Factor 7 is your ability to clot blood.  He is a little low, which means that his blood doesn't clot like it should. This also means that he may need medicine to help clot the blood, but this puts him at a higher risk for blood clots! The Doctors at their local hospital suggested having the medicine handy, just in case he needs it. They flew out to Phoenix this past Monday, and had a second opinion appointment at St.Joseph, in Phoenix, and their opinion contradicts what they were told locally. They want to give him the medicine, and not wait to see if he needs it.  They will ask Dr.Spetzler more about it Tomorrow at Pre-Op.    Contradicting opinions is the worse!!  

For Drew, I am asking to pray for many things.  Or course, pray that his Low Factor 7 will not be of any issues and that the surgery is a complete success at removing ALL the cavernoma and no new permanent deficits!!  Also Pray that he uses that teenager's boy mind they all have to be strong and stubborn into this recovery! Pray that he does not have ANY paralysis, on any part of his body, legs, arms, one sided, face, anything!!!  Pray that whatever it is that his body decides he will have to recover from, it will be done steadily quick, so he can keep his Spirit good, positive and happy. I do not want Drew to experience any long "low" and slow period. I want him to be full of encouragement and progress, so he will have NO doubts that he will be back to normal!   That's what I want to pray now for Drew.  I think sometimes, it is ok to give God some orders.  Right?

Don't even correct me if I'm wrong. :) After all, he does show up at surgeries :)

When told that a lot of people were praying for him during performing a surgery
Dr.Spetzler said : "I know, I could feel it" 




Crystal



Do you remember Crystal, the sweet single mom  I asked you to pray for back in January, because she was having a first surgery in preparation for a Brainstem surgery later this year?  Well, later has arrived!!  Yes, this quick!

Crystal has been struggling with a brainstem cavernoma symptoms/bleeds for several years now! When she contacted me, thru my "Brainfart Facebook page", she told me that she has been told "inoperable" and, like I did at first, had just accepted it!  I may of encouraged her not to accept that fate, but she would of never gone this far without her courage and amazing determination.   First, she found a doctor that studied under Dr.Spetzler at the Mayo Clinic, in Florida. Then, she moved herself and her daughter, left her beloved church and friends, to Florida, to be closer to her new doctor.  That Neurosurgeon did offer the surgery, and even tho he was skilled and confident for it, her symptoms have kept getting worse, and she decided to send her Scans to Dr.Spetzler. He came back with an offer for surgery as soon as she wants, no more waiting!!!

Friday, April 11th, 6am. Crystal is on her way to Phoenix right now! She is to have her pre-op tomorrow, for Friday' surgery!   Please pray for Crystal as she lays her life in the hand of Dr.Spetzler. Pray that she feels complete peace. I can't say how important that is enough. It is so hard to go in for a surgery that you know will change you, but you just dont know how... The will to survive and climb your way back up is amazingly strong, but it is little to compare to the desire and need to feel complete peace.

As I saw Crystal go courageously into her Journey to be pro-active for her own health, I was so proud of her, and still am.  She thanked me so many times...made me cry with her sweet words, too.  That is when I realised that I may of felt helpless and insignificant many times, but I dont need to win a Nobel price, or have a high paying job,  to make a difference in the world. Just be doing something so small as to encourage someone, can make a impact on someone's life... in return, they do the same, and that person does the same, and so on.   It just makes me want to help more and more people. Find even more ways to reach out.  I want people to find Dr.Spetzler right away when they type into google "Cavernous Malformation in brainstem" or "Brainstem surgeon". It makes me so sad that people have to dig, dig, and dig some more!!   I am happy that they find him thru this blog, but I want them to find him easier than that.  I want all of Neurosurgeons to know about him, and to stop telling people to go home to die, but to say "But, there is a Surgeon in Arizona that takes on cases like yours" Why dont they do that, why??? That's another post....

Crystal is beautiful, inside and out. She has an amazing Mother and family member to support her, a loving "new" church that welcomed her dearly, and friends that care deeply about her.   She is a single mother to a beautiful little girl who is to turn 9 at the end of the month.  She is worried at the idea of her mommy not being back home for her birthday.

Let's just pray for a great surgery outcome, no permanent deficits, peace for Crystal, her mother, her daughter, and all her loved ones.   I know she will do great.   At Barrow, a nurse told me that Brainstem surgery patients were of the most resilient, happy, positive people she has ever worked with.  Simply because to choose to have this surgery, knowing you will lose functions, temporarily or permanent (or both), you simply have to be one of these people.  Now, i know people who didnt choose it, and were blessed to have a great surgeon to do the Emergency surgery when they needed it, but i can tell you that I have never been around a bunch of funny, positive, crazy people, as I am with my group of Brainstem surgery survivor. hahaha    We have down days, but we sure know how to laugh.

Crystal is one of them, which is why you never heard me ask "please pray for a positive attitude" because its already there.   However, Peace, Peace to keep the good spirit despite the pain, struggles and uncertainty, is everything. Without Peace, it is incredibly hard to remain calm and happy in a situation like this.   Hope? We have hope. We have plenty of it. Faith? Would it surprise you that every single person that reached out to me, found Dr.Spetzler and had surgery, are strong believers?  I find it amazing... This is not a spiritual Blog. But my faith in God is clear.  I dont preach to those reaching out to me either, but it happens that everybody is a beleiver!   If yourself do not believe in God or the power of prayer, I know that you will think of Crystal, and anybody that I share about. Send them what you do best, thoughts, vibes, whatever it is. I know you have and will continue to do so.

Like her Facebook Page: Crystal Crazy Cavernoma, to keep up to date with her progress!