Wednesday, January 1, 2014

Recommended Physicians Who Have Taken Good Care of us, from the Schwannoma Survivors

Hello Schwannoma Survivors!

I have had a goal to start a sort of "Recommended Physicians" list on our blog.  One of the most common questions that we get on the Facebook page is "Do you know of a good surgeon who deals with these issues?" in this or that city or state.  In the United States at least this is a difficult proposition to compile such a list, because of the size of our country and the vast number of hospitals and facilities where neurosurgery is practiced.  However my idea was that we COULD simply create a list - one which could be amended and added to, of physicians who have treated us well and who have given Schwannoma Survivors the best possible results, considering all the challenges that we have associated with these tumors.  

I will be the first to say that these are simply recommendations; they are not verdicts on the entire career and abilities of the surgeons in question.  Neurosurgery, as many of you know, is a very complicated business and nobody - not myself or anyone else can guarantee perfect results or spectacular outcomes. But I thought we can indeed tell you which surgeons treated members of our group well - and delivered good enough results such that our group members would recommend them to someone else seeking treatment.  

Here is the list we have, which we will expand as more suggestions get sent to us:

(*Note,  In order to more specifically point people to Acoustic Neuroma specialists, we have created a similar "Recommended Physicians" page for those who need to find an experienced Acoustic Neuroma Neurosurgeon; you can find that list at :

http://schwannomasurvivorsandfighters.blogspot.com/2015/09/physicians-who-have-taken-good-care-of.html  .

 We are currently arranging the two lists and will be moving most ENT listed specialists over to the Acoustic Neuroma list.)
_____________________________________________________________

Dr Thomas Scully (Location, Arizona, United States)

Northwest Neurospecialists, Tucson, Arizona

Phone: (520) 742-7890


Notes for Dr Scully: Dr Scully was the surgeon that removed my Schwannoma in 2009 
(Neil the creator of the blog and FB page)  He is an excellent surgeon, a great person, and his staff
were all exceptional.  Would highly recommend him.

____________________________________________________________

Dr Alfred T Ogden (Location, New York, United States)



Department of Neurological Surgery





Neurological Institute

New York, New York 

Phone: (212) 305-0795
http://www.columbianeurosurgery.org/doctors/alfred_ogden/
Email

_____________________________________________________________
Dr Mark H Bilsky (Location, New York, United States)

Memorial Sloan Kettering Cancer Center
New York, New York

http://www.mskcc.org/cancer-care/doctor/mark-bilsky


Phone: 212.639.2275

______________________________________________________________

Dr Allen H. Maniker (Location, New York, United States)

Beth Israel Medical Center
New York


Phone: (212) 844-8383



_______________________________________________________________

 Dr Raj Murali  (Location, New York, United States)

Westchester Medical Center
Valhalla, New York

http://www.westchestermedicalcenter.com/rajmuralimdfacs

Phone: (914) 493-7000

 ________________________________________________________________

 Dr Eric Elowitz  (Location, New York, United States)

Weill Cornell Physicians
New York

http://www.weillcornell.org/physician/eelowitz/

Phone: 212-746-2870

 _________________________________________________________________

 Dr Michael Cho  (Location, New York, United States )

Mid Hudson Nuerological Specialists
Poughkeepsie, New York


http://michaelhchomd.com/mid-hudson-neurosurgical-specialist-pc-biography.htm

_________________________________________________________________
Dr Ankesh Negam

 Albany Med, Albany, New York
http://www.amc.edu/PhysicianDirectory/index.cfm?event=showPhysicianDetail&PRACT_ID=4833

 Phone: 518.262.0940
FAX: 518.262.4926
_________________________________________________________________

 Dr Allan D Levi  (Location, Florida, United States)

University of Miami Hospital
1400 N.W. 12th Ave
Miami, Florida 33136



Dr Roberto C Heros  (Location, Florida, United States)

University of Miami Health System
Miami, Florida

http://uhealthsystem.com/doctors/profile/1233

Phone: 305.243.6946
FAX: 305.243.3247
_________________________________________________________________

 Dr Allan Belzberg

 The Johns Hopkins Hospital, Baltimore, Maryland

 http://www.hopkinsmedicine.org/profiles/results/directory/profile/0005517/allan-belzberg

 (Contact phone numbers Listed on the link above )

 ___________________________________________________________________

 Dr Jean-Paul Wolinsky 

The Johns  Hopkins Hospital Baltimore, Maryland

http://www.hopkinsmedicine.org/profiles/results/directory/profile/0019298/jean-paul-wolinsky 


Phone: 410.955.4424

FAX: 410.502.3399
  • _________________________________________________________________

Dr Jaishri Blakeley  (Location, Maryland, United States)
(Neurologist) Johns Hopkins Medicine
Baltimore, Maryland

http://www.hopkinsmedicine.org/profiles/results/directory/profile/0017623/jaishri-blakeley

Phone: 410-502-6732
________________________________________________________________

Dr Jon Weingart

 The John Hopkins HospitalBaltimore, Maryland

 https://www.hopkinsmedicine.org/profiles/results/directory/profile/0004228/jon-weingart
Phone: 410.614.3052

_________________________________________________________________

 Dr. George Jallo (Florida, United States )

Johns Hopkins All Children’s Hospital 
Director,Institute Brain Protection Sciences
601 5th Street South, Suite 511
St Petersburg, Florida 33701
Office  (727) 767-8181


Phone: 410-955-7851

_________________________________________________________________

Dr C Rory Goodwin, PhD

 DukeHealthDurham, North Carolina

 https://www.dukehealth.org/find-doctors-physicians/c-rory-goodwin-md-phd
Phone: 919.684.6273 FAX: 919.668.1221

 _______________________________________________________________
Dr Richard Lytle

Mission Hospital 
Asheville, North Carolina

http://health.usnews.com/doctors/richard-lytle-129125

Phone: 828.255.7776

FAX: 828.274.7855

_________________________________________________________________

Dr S. Scott Lollis  (Location, New Hampshire, United States)

Dartmouth-Hitchcock Medical Center
Lebanon, New Hampshire

http://cancer.dartmouth.edu/neuro_brain/teamprofile/57223/S_Scott_Lollis_MD

Phone: (603) 650-8730
___________________________________________________________________

Dr Tomothy Lucas (Location, Pennsylvania, United States )

University of Pennsylvania 

http://www.pennmedicine.org/providers/profile/timothy-lucas

Phone: 800- 789- 7366

__________________________________________________________________

Dr David Wright

Allegheny Hospital
Pittsburgh, Pennsylvania

http://doctor.webmd.com/doctor/david-wright-md-dd98d38f-35ed-45c8-9bc0-7d36b4fbdd1c-overview


Phone: 412.359.8850
__________________________________________________________________

Dr James F Pingpank

 UPMC Passavant-McCandlessPittsburgh, Pennsylvania

 http://hillman.upmc.com/find/providers/james-pingpank-59683
Phone: 412.692.2852
___________________________________________________________________

 Dr Eric M Horn, PhD

IU Health Neuroscience Center
Indianapolis, Indiana

https://www.goodmancampbell.com/physicians/eric-m-horn
Phone: 317.396.1300
__________________________________________________________________

 Dr Robert Spinner  (Location, Minnesota, United States )

 Mayo Clinic
Rochester, Minnesota

 http://www.mayoclinic.org/biographies/spinner-robert-j-m-d/bio-20054099

Phone: 507-538-3270

___________________________________________________________________

Dr William Krauss  (Location, Minnesota, United States )

Mayo Clinic
Rochester, Minnesota


http://www.mayoclinic.org/biographies/krauss-william-e-m-d/bio-20054302 


Phone: 507.284.2511

___________________________________________________________________

Dr Anthony Burrows

 Mayo Clinic, Mankato, Minnesota

 https://mayoclinichealthsystem.org/providers/anthony-burrows-md
Phone: 800.327.3721

 __________________________________________________________________
Dr Raouf Mikhail

Hurley Medical Center 
Flint, Michigan

http://health.usnews.com/doctors/raouf-mikhail-250063

Phone: 810.238.1118

FAX: 810.238.9849
___________________________________________________________________

Dr Samuel Borsellino (Location, Ohio, United States )


Cleveland Clinic
(Hillcrest Hospital, Mayfield Heights, Ohio)


Phone: 216.636.5860

 ________________________________________________________________________


Dr Nicholas Bambakidis (Location, Ohio, United States )

University Hospitals Case Medical Center
Cleveland, Ohio

http://www.uhhospitals.org/find-a-doctor/bambakidis-nicholas-9205

Phone: 216.844.3192

____________________________________________________________________

Dr Bradley H Koffman (Location, Kansas, United States)

Menorah Medical Center 
Overland Park, Kansas 


Phone: 913.498.6270 
FAX: 913.498.6619
___________________________________________________________________
Dr Douglas E Anderson

Loyola Medicine
Chicago, Illinois

http://health.usnews.com/doctors/douglas-anderson-18942

Phone: 708.216.9000
FAX: 708.216.4948

____________________________________________________________________

Dr Dachling Pang  (Location, California, United States)

Dameron Hospital 
Oakland, California 

 http://health.usnews.com/doctors/dachling-pang-2737 
Phone: 510.752.1000
_________________________________________________________________
Dr Praveen Mummaneni
UCSF Department of Neurological SurgerySan Francisco, California
http://neurosurgery.ucsf.edu/index.php/about_us_faculty_mummaneni.html
Phone: 866.81.SPINE
____________________________________________

 Dr Shuer Lawrence (Location, California, United States)

Stanford University
(Stanford Hospital and Clinics, Palo Alto, California)

https://med.stanford.edu/profiles/lawrence-shuer

Phone: 650.723.6469
FAX: 650-725-8279
Email: lshuer@stanford.edu

_________________________________________________________________

Dr. Patrick C. Hsieh  (Location, California, United States )


(Practices in Southern California USC, etc) 

Contacts listed on link
_________________________________________________________________

 Dr John C. Liu (Location, California, United States )

(Practices in Southern California, USC Keck Hospital, and Beverly Hills)

Contacts listed in link

__________________________________________________________________

Dr. Bohdan Chopko  

Ohio Neurological Physicians

https://www.ohiohealth.com/find-a-doctor/profile/4420/Bohdan-W-Chopko



Email: bchopko@stanford.edu

 *Note on Dr Chopko; he has received very glowing reviews from people who said that he was an excellent surgeon, and truly a very kind and understanding person.  He came to our attention because he successfully removed a 9 POUND Schwannoma from a man.  Also, another lady wrote to say she had travelled from out of state to have him remove her Schwannoma, and that he, his staff, and his treatment were top notch.

 _____________________________________________________________________
Dr Robert Spetzler

St. Joseph’s Hospital and Medical Center
Phoenix, Arizonia

http://health.usnews.com/doctors/robert-spetzler-9564

Phone: 602.406.3489

FAX: 602.406.4402

_________________________________________________________________

Dr Andrew Ko

 UW MedicineSeattle, Washington

 https://www.uwmedicine.org/bios/andrew-ko
Phone: 206.598.3300
FAX: 206.598.6494
_______________________________________________________________

Dr Alex Mohit (Location, Washington state, United States)

 CHI Franciscan Health
Gig Harbor, Washington


http://www.chifranciscan.org/PhysicianDetails.aspx?physicianID=636062 


Phone: 253.274.7505
FAX: 253.274.7995
_________________________________________________________________

 Dr James L. Netterville  (Location, Tennessee, United States )

 http://www.vicc.org/dd/display.php?person=james.netterville

Phone: 615-322-6180

Physicians: 1-877-936-8422

*Note on Dr. Netterville, Dr. Netterville comes highly recommended as a specialist in treating Vagal Schwannomas.  
His use of "Intracapsular Enucleation " surgical treatment has produced excellent results that make his name among the leading surgeons practicing treatment of head and neck tumors, particularly Vagal Schwannomas.
_______________________________________________________________________________


Dr Daniel Refai (Location, Georgia, United States )

Emory Ortho and Spine Center
Atlanta, Georgia


http://www.emoryhealthcare.org/physicians/r/refai-daniel.html 


Phone: 404.778.7000
_______________________________________________

 Dr Jason Weaver (Location, Tennessee, United States)

 Semmes-Murphy Neurologic and Spine Institute
Memphis, Tennessee 

 https://www.semmes-murphey.com/contact_us.php

 Phone: (901) 522-7700

 _________________________________________________________________
Dr Lucien Nedzi

 UT Southwestern Medical CenterDallas, Texas

 https://utswmed.org/doctors/lucien-nedzi/
Phone: 214.645.8300
_________________________________________________________________

Dr Andrew C Roeser ( Location, Texas, United States)

Neurosurgical Group of Texas
Houston, Texas

http://www.neurosurgery-texas.com/andrew-c-roeser-md.html 


Phone: 713.790.1211

_________________________________________________________________
Dr Arnold B Vardiman

 Neurological Associates of San Antonio
San Antonio, Texas

 https://sahealth.com/physicians/profile/Arnold-B-Vardiman-MD
Phone: 210.477.1956
________________________________________________________________

 Dr Kevin O. Lillehei (Location, Colorado, United States) 

University of Colorado Hospital
Aurora, Colorado


http://www.ucdenver.edu/academics/colleges/medicalschool/departments/Neurosurgery/faculty/clinicalfaculty/Pages/lillehei.aspx 


Phone: 303.724.2305
_________________________________________________________________

Dr Rudy Kovachevich (Location, Colorado, United States)

 Hand Surgery Associates
Englewood, Colorado

 http://www.hsacolorado.com/rudy-kovachevich/

Phone: 303-744-7078

 ________________________________________________________________________

 Dr William Couldwell (Location, Utah, United States )

 University of Utah Health Care
Salt Lake City, Utah

 http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0311081


Phone: (801) 585-6065
___________________________________________

Dr Rajiv Midha             (Location, Calgary, Alberta, Canada )

 Foothills Medical Centre, Calgary
Contact information on the link below:

https://www.ucalgary.ca/dcns/about-dcns/facultymembers/midha-rajiv

_________________________________________________________________

Dr Andrew Lee  (Location, New Westminster, Canada - near Vancouver)

Contact information on the link below:

https://neurosurgery.med.ubc.ca/faculty/faculty-spotlight/andrew-lee-md-frcsc/

Phone: 604.526.8979
FAX: 604.526.7317

________________________________________________________________

Dr Darren Biberdorf.       (Location, Victoria, BC, Canada )

Contact information on the link below:

http://south-island.fetchbc.ca/service.html?i=724
________________________________________________________________

Dr Richard Reid. (Location, Victoria, BC, Canada )

Contact information on the link below:

https://neurosurgery.med.ubc.ca/faculty/faculty-spotlight/richard-reid-md-frcsc/

________________________________________________________________

Mr Ashok Paul. (Location, United Kingdom)

 Manchester University NHS Foundation TrustManchester, United Kingdom

 https://www.spirehealthcare.com/consultant-profiles/mr-ashok-paul-c3611975/
Phone: 0161 276 4037
_______________________________________________________________

Mr. Vladimir Petrik  (Location, United Kingdom )                                                                            

Consultant Neurosurgeon
Queen Elizabeth Hospital
Birmingham, England

Phone: 0121 371 6894

Extension: 0121 371 6894

_________________________________________________________________

Dr Nick Thomas  ( Location, United Kingdom )
Kings College Hospital, London, UK

 http://theharleystreetclinic.com/neuroscience-consultant/nick-thomas

Phone: UK  020 7034 8709

 ___________________________________________________________________
Mr Dirk Strauss (Location, United Kingdom )

Consultant Surgeon
The Royal Marsden Hospital
London, England

http://www.royalmarsden.nhs.uk/consultants-teams-wards/staff/consultants-r-z/pages/mr-dirk-strauss.aspx


Phone: 020 7811 8111
_________________________________________________________________

 Mr Francis Johnston (Location, United Kingdom )

St. George’s Hospital / Parkside Hospital
Wimbledon, United Kingdom



Phone: 020 8971 8000
_______________________________________________________________

Dr Bernhard Meyer (Location, Germany)

Technische Universität München - Munich, Germany

(Click on Link)



_________________________________________________________________


 Dr Benjamin Jonker (Location, Australia) 

Royal Prince Alfred Hospital 
Sydney, Australia 


Phone: 02 6362 0711

___________________________________________



 Dr Erica Jacobson (Location, Australia )

Sydney’s Children Hospital 
Randwick, Australia

Phone: +61 2 9326 6140

________________________________________________________________


Dr Craig Timms ( Location, Australia )


Melbourne, Australia

Suite 2, Lvl 8, Epworth Centre, 32 Erin St, Richmond, VIC, 3121

  • 1300 886 631

Read more: http://www.startlocal.com.au/health/neurosurgeons/vic_melbourne/#ixzz35N4pVK3x
________________________________________________________________

 Dr Su Jang Wen (Location, Singapore)

Gleneagles Medical Centre
Singapore 258499

http://www.singaporedoc.com/index.php/cardiothoracic-surgeon/dr-su-jang-wen.html 


Phone: 6473 3930
_______________________________________________________________



These are the physicians we have who received direct recommendations from our group members.  This list will be expanded as more people share with us good experiences they've had with particular surgeons.  

If anyone who has had treatment for a Schwannoma and feels their physician is worthy of a recommendation for others who are currently seeking treatment, feel free to contact us at the Facebook page "Schwannoma Survivors & Schwannoma Fighters" 



(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)






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Sunday, October 6, 2013

If You Are Doing Research on Schwannomas, We Have a Group and Here We Are

Hi there, I'm Neil Myers and I am the coordinator of the online group "Schwannoma Survivors & Schwannoma Fighters".  We have this blog by the same name, and also a Facebook page with approximately 140 members.  Probably 95% of those people have either been diagnosed with one or more Scwhannomas, or they have a family member who has.

This short blog is for anyone who is doing research on Schwannomas.  We want to let you know that we are here, and some of us would be willing to share some our stories and our medical specifics with anyone who is doing medical research on Schwannomas.

When I founded the page nearly a year ago, I looked around on Facebook and other places to see if there were any groups for people who have had Schwannomas.  I didn't find any.  Even the medical information available was not very clear, and sometimes simply matters mentioned in very densely worded medical journals.  I wanted to make a page that would provide support and information for those who have had or currently have Schwannomas.  And one of the stated purposes was to bring light on these tumors - which are not terribly common.  (Though I have not read or been made aware of statistics that can state exactly how rare.)

If any Physician or person doing medical research on these tumors would like to contact us, visit us on the facebook page at:
 https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters

Or email me at: neilmyersart@gmail.com .

We are here.  Let us know if we can help!

Neil Myers
Survivor of Thoracic Spinal Schwannoma, removed in 2009
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Saturday, June 15, 2013

A Short Q and A with Dr George Jallo - Answering Some Basic Questions About Schwannomas

This post I am very happy to share with everyone - Dr George Jallo of Johns Hopkins Hospital was kind enough to agree to answer a short Q and A to try to help us with some clear answers to fundamental questions about Schwannomas and what is typical for those who have been diagnosed with one or more of them.  Dr Jallo is Professor of Neurological Surgery, Pediatrics and Oncology, Clinical Director, Pediatric Neurosurgery, Director, Neurosurgery Residency Program at Johns Hopkins.  I told him that I hope that we can answer some of the basic questions about Schwannomas so that we may be able to fill a gap that there seems to be in people's knowledge of these tumors, and here are his answers to a simple set of questions I sent him.  - Neil
1)     Being diagnosed with a Schwannoma is a frequently confusing and upsetting situation for those who are affected by these tumors.  What would you say is the most important advice that you would give someone newly diagnosed with a Schwannoma?  What are, in your opinion, are wise first steps to take ?  
 The best advice if once diagnosed with a Schwannoma is to confirm the diagnosis and obtain all the details.  Where is the tumor, how large is it? Is it compressing by spinal cord or brain? Do I need to be screened for other tumors.  Fortunately the vast majority of these tumors are benign and do not require any treatment further than surgery. One needs to be certain it is a schwannoma and not another tumor type. However the only sure way to have the correct diagnosis is surgery and then histological analysis/biopsy of the tumor 
2) I have said to people on our FB page that, from my own experience, being diagnosed with a Schwannoma usually means that one will face surgery at some point, now or later.  I asked my own GP and neurosurgeon if they would validate that statement, generally, and they both said yes.  Do you also take this view that Schwannomas will, in most or almost all cases, require surgery at some point?  And what are some cases, if you can give any general or specific advice, in which one may NOT want to opt for removal of their Schwannoma?  Please share any specifics you can to shed some light on the removal or non-removal of Schwannomas.

Once diagnosed most people will require surgery as although these tumors are benign they do grow slowly. The only exception that surgery is not needed is when these tumors are very small or in a location which does not compress the spinal cord, brain or nerves.
 
3) In your own career as a surgeon, in the cases where you have had to help patients confront Schwannomas, approximately what percentage of those were removed by surgery?  I understand specifics may not be possible, but a general estimation would perhaps be helpful in helping people understand how many have to come out, and how many are treated or monitored by other means.

I would say that I have only observed 10% of patients as the remaining patients (patients that do not have their Schwannomas removed).  We do not operate on some smaller tumors in older patients.  Of the Schwannomas we see we operate on approximately 90% due to the fact that patients either have symptoms from the tumor or the tumor has grown on serial MRI scans. 


4) People are frequently confused and feeling a bit lost after diagnosis with a Schwannoma.  Are there any online resources that you would suggest for those who are newly diagnosed?  Anything to help them understand their situation better?    
No good sites as most focus on multiple schwannomas or neurofribromatosis.  *Note from Neil - we hope to remedy this!
5)  Do you have a suggestion as to what hospitals and research hospitals are the best when it comes to Schwannoma surgery?  We all understand that Johns Hopkins, your hospital, is one of the top facilities anywhere - but for those in other parts of the country who may not have easy access to JH, are there any other excellent programs that you would suggest? 

I do not recommend  any specific hospital but to ask your surgeon how many such tumors he/she has operated on and long term results.  You just want to have an experienced surgeon perform the operation.

Dr. George I. Jallo
Professor of Neurological Surgery, Pediatrics and OncologyClinical Director,  Pediatric Neurosurgery
Director, Neurosurgery Residency Program


CONTACT INFORMATIONThe Johns Hopkins Hospital
Department of Neurosurgery
600 N. Wolfe Street, Phipps 556
Baltimore, MD 21287
410-955-7851 (p)
410-955-7862 (f)
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Wednesday, May 1, 2013

Moral Support, Surviving Schwannomas With the Help of Family and Friends

Sometimes the answer to something fairly complex is right in front of you.  These days we just have to take a moment, and hopefully stop looking at our gadgets, and realize the obvious.  I was thinking about all this as it regards recovery from illness.  When you meet people who have suffered something similar to you, there is a natural tendency towards shop talk.  Ie, what medications you find have worked for you....how you manage chronic pain afterwards...or what kind of experience did you have with physio-therapy afterwards.  This is the case frequently with Schwannoma survivors, and that is all well and good - and natural.  Yet there is another element that looms large over one's ability to recover from illness, and that is the moral support from family, friends, and loved ones.

I should say that one of the things I hear most often, as the coordinator of the "Schwannoma Survivors and Schwannoma Fighters" Facebook page, is how grateful people are for the support of other survivors that are a part of the page.  Kinds of comments like "I am so glad to talk to people who really understand"...and "Thanks so much for doing this" etc.  What I realized in my countless conversations with these wonderful people is that one of the things that they value most is the moral support from other people who have been through the same experience.  I told someone it might be a little like the feeling of kinship that soldiers have if they have been to war together - but in our case, the war was in our own bodies.  It has been a happy and humble journey, on my part at least, to feel the kindness and warmth coming back at me from people who now have a way to talk to others who have been through this.  And there is a tone almost of relief - that intangible moral support is something that is, I think, not talked about enough. 

I have told many Schwannoma Survivors that in my worst moments, in late 2008 and early 2009 - I didn't much care about anything.  Just simply getting through one day and onto the next was a task that required every ounce of my energy, both mental and physical.  I didn't care about my paintings - which have been my life's work.  I didn't care about those beautiful places I was sure I would never see.  Even the presence of my extended family, who I all love dearly, receded into the background when each day just became a grinding, grueling struggle against constant pain.  When I think back to what sustained me, it was really only two things; my lovely wife, and our baby son who was born in March of 2009.  Little else mattered.  I felt like an airplane descending, and I knew that when I finally hit the ground, I would be in a wheelchair and life would be unalterably different.  But my wife kept at me.  She kept me going to Doctor's appointments.  She kept me pushing on, even when I was miserable.  And our beautiful little boy, Liam, needed only his smile and his being there to remind me that I had a home team worth fighting for.  In the end, in all came down to my wife and son - and to be honest, and I have told some close friends - and I believe I am saying this publicly for the first time now; if it weren't for those two people I would have had no qualms whatsoever about ending my life, by one means or another.  And I value life above all things.  I am not religious so I live on the assumption that this may well be the only life we have.  I would not waste it or throw it away on a whim.  But when pain has ground you down - those thoughts do creep in.  A pain sufferer's mind is ruled by that one inescapable thought...I want this to STOP.

Fortunately, my tumor was found and removed and I have lived not only to enjoy my days with my wife and son, but in November of this past year we welcomed our second son into the world.  I now feel that I could be broke and on my last penny and still be a rich man in this world.

So it is my hope that if there is someone out there fighting a hard fight, I hope you have your family or someone you love and care for and who do the same for you.  And I hope that there are people in your life that don't let you go when you are upset - who tell you and believe that you can conquer any mountain before you.  I  have said before that you can do anything if you are loved - and whatever you do if you don't have love in your life won't mean diddly shit.  I hope we can all remember the value of not just the empirical knowlege, but the moral support and no-strings attached friendship that gets us through rough times.

Many times in the past I have done things for people and they would look at me like "Uh, thanks, but what's your deal?"  I actually enjoy just trying to do good with NO expectation of reward.  But in fact, I think what the Dalai Lama said is true - that trying to live a life guided by kindness and compassion is as much for yourself as the others you help.  My payment for doing good - or trying to, is that good feeling I get when I put my head down to sleep at night.  I don't expect a pot of gold on my doorstep.  And I am suspicious of people who do good with clear expectation of reward.  No, I try to do good - to offer friendship and moral support because it makes me feel good.  And maybe...just maybe, it makes this venemous world a little more tolerable for people who want to live well in it.

So I say hat's off for that most intangible kind of support - that slap on the back.  That hug that you weren't expecting.  That extra beer you had with your friend when you could tell that they needed to talk.  And to that grateful, kind look that says back to you "I'll be there for YOU if you ever need ME."  Much of the world makes a virtue of being tough - and that of course has it's uses.  But I for one think that people who strut around and act tough are probably much like those boxers with a glass chin.  I know, and I have no doubt about this - that the people who really are tough are ones who have been through the fight and know just how low the bottom really is.  And they had people around them love them and lift them up to keep them afloat.  I had this.  You can't put a price on it.  You can't put it in a bottle and sell it.  But you sure you know it when you have it...

Neil

 (Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)




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Monday, April 22, 2013

Sailing the High Seas - The Crossing to Recovery, by Vitor De Souza Carneiro

(Here is a new post by Vitor De Souza Carneiro, a great friend of the "Schwannoma Survivors" Facebook page and blog.  He just recently had surgery to remove a Schwannoma, and was kind enough to write a bit about his experiences post surgery.  Thanks Vitor!  Neil)

And the Big Day came. I was feeling great the day I went to hospital to have the operation. The main reason was that I had managed to organize almost everything before hand so I could come back to what I call a “Recovery Temple”. The day before surgery was also special. I spent all day with my wife, enjoying, not even thinking about surgery.
I know it sounds weird, but I was actually excited about the whole thing. Finally a major mile stone on the healing process: The removal of the tumor. My neurosurgeon came into the room and we had a nice chat. I told him I hadn’t felt any pain, what so ever, for the last 3 months. With a tumor the size of mine, that was pretty unusual and he took the time again to look at the images and discuss the importance of the operation. I really appreciated that. The last thing I told him was: “Doc, you got my back!”
I knew it would be straight forward, in and out. Done. My wife said it was the 5 longest hours of her life (4 hr of actual procedure). When I opened my eyes I felt like I had been chopped in half by a chainsaw. But that only lasted a few seconds and they gave me a nice relaxing happy something that had me feeling ‘no worries’ for the next 48 hrs. The doctor was very happy with the procedure. They managed to remove all the tumor and there was no major complications. He even showed me pictures of the procedure while I was in ICU.
I spent a total of 7 days in hospital. Bloody long time, but not really. I knew that every second there was important. I was being looked after so well by all the staff. There were, as expected, a few small challenges though. I had really strong headaches and was feeling nauseated and vomiting for good 3 days. Then, they wanna get you up and going as quick as possible. But because my body was still producing the liquid that soaks our nervous system, I had this massive headache and my eye balls felt like they were going to pop out.
That is when surrender and patience come into play. Even though having a major spinal surgery is not the most smooth experience one can have, if you are patient, things will stabilize again. Well, the days went by and the so awaited discharge came. Quick note: Here might not be the place to express my reflections on Patience and other philosophical question about life, but feel free to write me and we can exchange ideas.
It felt really good to be home. Special friends came for quick visits and I was slowly getting my bearings. But once again, I had to surrender and accept. For someone hyperactive active (when I say hyper I mean suppa duppa Hyper active) to be so deprived of free and easy mobility is a major issue. Again, patience and relearning. I have to be really respectful and mindful of all my movements and almost everything needs to be calculated. After a while we just figure things out and adapt. So, in regards of the practical sides of things my wife is being superb and we are making things happen, very slowly. The boat is just Sailing by...
But it didn’t take long until I started to see a few nasty looking clouds forming in the horizon. And before we could do much the storm hit us. I used to sleep like a sloth, not anymore. My bowel used to function like a swiss clock, not anymore and I used to have a good humor, not anymore. That hit us day 2/3 at home. This is the message I sent my friend Neil of how I could better describe how I was feeling:
“We are sailing the storm. The sea is a bit rough, bumpy and gusty but we got the boat under control. The forecast looks good. For the moment we can only keep steering and getting used to the "roughness".Will see a good Physio tomorrow. “
And sure enough the storm passed. Through natural medicines we manage to get my guts working again (gosh, that felt good) and reestablish a decent sleep. But I know that this recovery is like a ocean crossing: we might know the prevailing winds and currents but anything can happen, any time. So, we take as it comes. Sometimes uncomfortable, sometimes magic like a beautiful sunset in the middle of the Atlantic. The most important thing is that I am learning heaps about myself, about life and about LOVE.

 (Disclaimer: advice shared on this blog or on our related Facebook page can not be a replacement for proper medical treatment by a trained physician.  Speak with a Doctor before making any medical decisions.)
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