Schwannoma Survivors & Schwannoma Fighters: 2016

Monday, November 28, 2016

An Experience With Cyber-Knife Treatment for Cervical Schwannoma

Hi everyone! Today I'm happy to present the story of lady who is a friend of our page - her name is Rae. Rae has undergone Cyber-Knife treatment for her Schwannoma, and she was kind enough to jot down her notes as the treatments progressed. Since Cyber-Knife is a kind of treatment that people commonly ask about, we thought it may be useful to share Rae's thoughts in the form of a blog. Cyber-Knife is a kind of targeted radiotherapy. It is used to try to shrink tumors, and it is also used to prevent the further growth of partially removed tumors. We encourage you to consult with you neurologist or neurosurgeon about any possible treatment with Cyber Knife - and we hope you find this firsthand experience helpful. Thanks! - Neil

Click here for a description of Cyber-Knife:

http://med.stanford.edu/neurosurgery/patient_care/radiosurgery_cyberknife.html
________________________________________________________________________

(Rae has a Schwannoma at C6 - C7 )

Prior to the first treatment, they made the mask which was a little frightening. It felt like a warm wet pillow held tightly on my face. that was left in place as they did a CT scan. This is what they use to put in the cyber knife machine to pin point the radiation beams on the tumor.

Treatment number one started with them giving me a 0.5 mg dose of Ativan when I arrived at the cancer center. I eventually got another 0.5 mg dose prior to being placed on the table. They strapped my arms and legs down and then placed the mask on my face. It was OK until they anchored it down. That was horrible. Long story kinda short..lol...the Ativan did nothing. They gave me Benadryl which was also not affective. I could not tolerate the mask over my face so they cut out the area of my eyes and nose. this made it much better.

After about 10 minutes into the treatmemnt the back of my head was burning. Once they start the treatment they cannot touch you or reposition in any way. Treatment number 2 was better as far as the pain goes...but not much. That brings me to treatment number 3.

Prior to my treatment I had a lot of back, neck, and arm pain and I took one dose of 10/325 hydrocodone. Then took the valium 30 minutes to the treatment. I still had pain in the back of my neck and head but it was bearable.

The treatments of 4 - 6 were not much different then the previous 3. Still very painful however I did take one norco 5/325 tablet on treatment 5 and two tablets on treatment 6. Treatment 6 was tolerable. Now, I am just waiting for the 3 months to re scan to see if the tumor is shrinking. Today the pain, tingling, and numbness in my arm seems to have increased. I was warned of this so I am trying to stay positive.

The doctor has said that they will do scans in 3 month intervals. The doctor at the cancer center has told me to not be alarmed if within the first 6 mo or so we see the tumor growing and my symptoms increasing ( that is really discouraging) but after that we should see the tumor shrink. They are hoping it will shrink and symptoms are relieved or it is possible the tumor will shrink but I still have symptoms. If that is the case I may then have surgery which will be less invasive.

Since i have finished my cyberknife treatments I continue to have pain and numbness. Some days are worse then others. I dont have a follow up MRI until May as the doctors say that in the first 3 months they generally see growth in the tumor.

Update from Rae, 6 months after

Hello...just thought I would give you an update. It has been 6 months post cyberknife. I had another MRI on the 31st. The tumor has not changed. Remains the same size. My neuro surgeon says that we will MRI again in 6 months. It may take a full year to see change. I continue to have pain and numbness.

Wednesday, September 21, 2016

Table of Contents for All the Schwannoma Survivors & Schwannoma Fighters Articles

Hello all! Today I am pleased to publish this index of all the Schwannoma Survivors blog-articles. This table of contents we hope will serve as a guide for those who may wish to search through immediately and find the blog or support article that may best suit them. We have currently published over 70 articles, case studies, commentaries, physician Q and A's - and various other helpful bits of information. We hope you find that this assists you on your journey - and if you yourself feel that you have experience that will help expand our knowledge on Schwannomas, particularly relating to those kinds of Schwannomas that are quite rare - feel free to contact me at neilmyersart@gmail.com and I'd love to hear from you.

Bear in mind that this index is created to stack the most critical and most used articles first, and then you can page through the various other subjects under the headings as you page downward.

I urge you if you have found this table of contents helpful, then please give it a Google + 1 , or feel free to recommend it to a friend who may need this info. As with all things relating to our blog and Facebook page, the contents will continue to change and be modified wherever they can be improved. And some of the organization of the blogs in this index may be changed in the future as well. But for the moment, it is enough to get this online so that it can be of service to those who need it.

Wishing you all much strength and a pain free day!

Neil - founder of the Schwannoma Survivors & Schwannoma Fighters FB page and blog

_______________________________________________________

Important Articles for Those who are Newly Diagnosed

What to ask the doctor if you have just been diagnosed with a Schwannoma.

http://schwannomasurvivorsandfighters.blogspot.com/2014/06/what-to-ask-doctor-if-you-have-just.html

¿Qué preguntarle al doctor si has sido diagnosticado con un Schwannoma?

http://schwannomasurvivorsandfighters.blogspot.com/2015/03/que-preguntarle-al-doctor-si-has-sido.html

Que Devrait-on Demander au Médecin si on Vient Juste d’être Diagnostiqué Avec un Schwannome? ( French )

http://schwannomasurvivorsandfighters.blogspot.com/2015/05/que-devrait-on-demander-au-medecin-si.html

被确诊神经鞘瘤后一些要问医生的问题：

http://schwannomasurvivorsandfighters.blogspot.com/2015/03/what-to-ask-doctor-if-you-have-just.html

What to ask blog – in Mandarin

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

http://schwannomasurvivorsandfighters.blogspot.com/2014/01/recommended-physicians-who-have-taken.html

Schwannoma Survivor Support Page; Email Contacts for Those Newly Diagnosed With Schwannomas

http://schwannomasurvivorsandfighters.blogspot.com/2016/05/schwannoma-survivor-support-page-email.html

Here Are Other Facebook Pages Dealing With Schwannomas

http://schwannomasurvivorsandfighters.blogspot.com/2015/06/here-are-other-facebook-pages-dealing.html

What to ask the doctor if you have just been diagnosed with Acoustic Neuroma

http://schwannomasurvivorsandfighters.blogspot.com/2015/11/what-to-ask-doctor-if-you-have-just.html

Physicians Who Have Taken Good Care of Us - Recommended Physicians for Acoustic Neuroma Patients

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

An Introduction to Schwannomas - Some Basic Facts About Schwannomas for Those Who Are Newly Diagnosed

http://schwannomasurvivorsandfighters.blogspot.com/2014/06/schwannomas-for-dummies-some-basic.html

Una introducción a los Schwannomas - Algunos datos básicos sobre los Schwannomas para aquellos que recién han sido diagnosticados (Spanish)

http://schwannomasurvivorsandfighters.blogspot.com/2016/03/una-introduccion-los-schwannomas.html

Alguns Fatos Básicos Sobre Schwannomas Para Aqueles que são Diagnosticados com Esses Tumors (Portuguese )

http://schwannomasurvivorsandfighters.blogspot.com/2015/05/alguns-fatos-basicos-sobre-schwannomas.html

神经鞘瘤简介 - 给被新确诊的神经鞘瘤患者的基本知识

http://schwannomasurvivorsandfighters.blogspot.com/2016/02/blog-post.html

Basic Facts blog – Mandarin

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

http://schwannomasurvivorsandfighters.blogspot.com/2013/06/a-short-q-and-with-dr-george-jallo.html

A Q and A with Dr Allen Maniker, Chief of Neurosurgery at Beth Israel Medical Center

http://schwannomasurvivorsandfighters.blogspot.com/2014/01/a-q-and-with-dr-allen-maniker-chief-of.html

Q and A with Dr Alfred Ogden, Columbia University Medical Center

http://schwannomasurvivorsandfighters.blogspot.com/2014/02/q-and-with-dr-alfred-ogden-columbia.html

A Q and A with Dr Christopher Moertel, Pediatric Neuro-oncologist at University of Minnesota Masonic Children's Hospital

http://schwannomasurvivorsandfighters.blogspot.com/2015/07/a-new-q-and-with-dr-christopher-moertel.html

Q and A on Schwannomas with Dr. Bohdan Chopko, from Stanford University Medicine

http://schwannomasurvivorsandfighters.blogspot.com/2014/10/q-and-on-schwannomas-with-dr-bohdan.html

"Where do You See The Future of Schwannoma Treatment and Research Going?" Three Neurosurgeons Weigh in on the Question

http://schwannomasurvivorsandfighters.blogspot.com/2014/11/where-do-you-see-future-of-schwannoma.html

Acoustic Neuroma Pages

What to Ask the Doctor if You Have Just Been Diagnosed With Acoustic Neuroma

http://schwannomasurvivorsandfighters.blogspot.com/2015/11/what-to-ask-doctor-if-you-have-just.html

How Long Before I Feel Better After Acoustic Neuroma / Vestibular Schwannoma?

http://schwannomasurvivorsandfighters.blogspot.com/2015/07/how-long-before-i-feel-better-after.html

Schwannoma Case Study # 10, Scott Sarah and The Story of His Acoustic Neuroma / Vestibular Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2014/09/schwannoma-case-study-10-scott-sarah.html

Schwannoma Case Study #8, Kayla Collins and her Battle with Acoustic Neuroma / Vestibular Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2014/06/schwannoma-case-study-8-kayla-collins.html

A Letter with Info on the After-Surgery Phase, for Acoustic Neuroma Survivors

http://schwannomasurvivorsandfighters.blogspot.com/2015/04/a-letter-of-advice-on-after-surgery.html

Cognitive Difficulties ARE Sometimes Mentioned After Acoustic Neuroma / Vestibular Schwannoma Surgery

http://schwannomasurvivorsandfighters.blogspot.com/2016/02/cognitive-difficulties-are-sometimes.html

Paranasal Schwanoma Articles

Case Study # 23 , Dani Thomas Shares the Story of Her Paranasal Sinus / Sphenoid Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2016/02/case-study-23-dani-thomas-shares-story.html

Vagal Schwannoma Articles

Case Study # 17, Lori Cramton Tells us About her Vagal Schwannoma (Tenth Cranial Nerve) Removal

http://schwannomasurvivorsandfighters.blogspot.com/2015/05/case-study-17-lori-crampton-tells-us.html

Intracapsular Enucleation, A Short Blog on a Promising Treatment - Especially for Vagal Schwannomas

http://schwannomasurvivorsandfighters.blogspot.com/2015/05/intracapsular-enucleation-short-blog-on.html

Trigeminal Schwannoma Articles

Schwannoma Case Study #9, Lauren Findlay and the Story of Her Trigeminal Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2014/08/schwannoma-case-study-9-lauren-findlay.html

Orbital Schwannoma Articles

Case Study # 16, Susan Hicks and the Story of Her Left Orbital Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2015/05/case-study-16-susan-hicks-and-story-of.html

Cervical Schwannoma Articles

How Long Before I Felt Better After Cervical Schwannoma?

http://schwannomasurvivorsandfighters.blogspot.com/2015/07/how-long-before-i-felt-better-after.html

Case Study # 22, Diane Schuler and Her Experience with Cervical Schwanoma

http://schwannomasurvivorsandfighters.blogspot.com/2016/01/case-study-22-diane-schuler-and-her.html

Thoracic Schwannoma Articles

How Long Before I Felt Better After Thoracic Spinal Schwannoma?

http://schwannomasurvivorsandfighters.blogspot.com/2015/07/how-long-before-i-felt-better-after_31.html

Schwannoma Case Study #11, Gina Forde and the Story of Her Thoracic Spinal Cord Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2014/09/schwannoma-case-study-11-gina-forde-and.html

Lumbar Schwannoma Articles

How Long Before I Feel Better After Lumbar Spinal Schwannoma?

http://schwannomasurvivorsandfighters.blogspot.com/2015/08/how-long-before-i-feel-better-after.html

Schwannoma Case Study # 12, Carol Zwick and the Story of Her Lumbar Spinal Cord Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2014/09/schwannoma-case-study-12-carol-zwick.html

Schwannoma Case Study # 1, Lumbar Schwannoma at L 5 S 1 , with Regrowth, Requiring Three Surgeries

http://schwannomasurvivorsandfighters.blogspot.com/2014/03/schwannoma-case-study-1-lumbar.html

Schwannoma Case Study # 6, Bart Johnson, Schwannoma Located on the Posterior Side of L4 - Schwannoma not yet Removed

http://schwannomasurvivorsandfighters.blogspot.com/2014/05/schwannoma-case-study-6-bart-johnson.html

Schwannoma Case Study # 7, Anonymous Person with Schwannoma at L2-L3, with Partial Removal

http://schwannomasurvivorsandfighters.blogspot.com/2014/05/schwannoma-case-study-7-anonymous.html

Sacral Schwannoma Articles

Case Study #24, an Anonymous Person with Pre-Sacral Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2016/02/case-study-24-anonymous-person-with-pre.html

Retreoperoneal Schwannoma Articles

Schwannoma Case Study #15, Tina Baker, and the story of her Retroperitoneal Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2015/04/schwannoma-case-study-15-tina-baker-and.html

How Long Before I Feel Better After a Schwannoma in the Torso?

http://schwannomasurvivorsandfighters.blogspot.com/2015/08/how-long-before-i-feel-better-after_16.html

Brachial Plexus Schwannoma Articles

Case Study # 14 Nick Nichols and the Story of his Brachial Plexus Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2014/12/case-study-14-nick-nichols-and-story-of.html

How Long Before I Feel Better After a Schwannoma in the Torso?

http://schwannomasurvivorsandfighters.blogspot.com/2015/08/how-long-before-i-feel-better-after_16.html

Articles Dealing With Schwannomas Located in an Arm or Leg

How Long Before I Feel Better After a Schwannoma in an Arm or Leg?

http://schwannomasurvivorsandfighters.blogspot.com/2015/08/how-long-before-i-feel-better-after_4.html

Case Study # 19, Carol Jackson and the Story of Her Sciatic Nerve Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2015/06/case-study-19-carol-jackson-and-story.html

Case Study # 18, Anonymous Person With Deep Peroneal Nerve Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2015/06/case-study-18-anonymous-person-with.html

Case Study # 21, Recovery from Schwannomas Removed From the Back of the Knee

http://schwannomasurvivorsandfighters.blogspot.com/2015/09/case-study-21-recovery-from-schwannomas.html

Schwannoma Case Study #5, Tiffany Heronimus, Schwannoma in the Left Elbow

http://schwannomasurvivorsandfighters.blogspot.com/2014/04/schwannoma-case-study-5-tiffany.html

Schwannoma Case Study # 13, Susan Chapman Ruggiero & The Story of a Schwannoma in her Foot

http://schwannomasurvivorsandfighters.blogspot.com/2014/12/schwannoma-case-study-13-susan-chapman.html

Articles on Schwannomatosis

How Long Before I feel better? - Views on Schwannomatosis

http://schwannomasurvivorsandfighters.blogspot.com/2015/08/how-long-before-i-feel-better-views-on.html

Schwannoma Case Study # 3, Sean Anderson Tells us About his Fight With Schwannomatosis

http://schwannomasurvivorsandfighters.blogspot.com/2014/03/schwannoma-case-study-3-sean-anderson.html

Schwannoma Case Study #4, Another Case Study of a Person Confirmed with Schwannomatosis

http://schwannomasurvivorsandfighters.blogspot.com/2014/04/schwannoma-case-study-4-another-case.html

Other Important Schwannoma Articles

Case Study # 20, Recovery from Schwannomas at C 7 and at T 8

http://schwannomasurvivorsandfighters.blogspot.com/2015/09/case-study-20-recovery-from-schwannomas.html

Schwannoma Case Study # 2, Kris Sres, with Posterior Mediastinal Schwannoma, Lower Esophagus

http://schwannomasurvivorsandfighters.blogspot.com/2014/03/schwannoma-case-study-2-kris-sres-with.html

How Long Before I Feel Better? Views on Recovery from Various Schwannomas

http://schwannomasurvivorsandfighters.blogspot.com/2015/08/how-long-before-i-feel-better-views-on_25.html

How Did a Schwannoma Feel Different than Regular Back Pain?

http://schwannomasurvivorsandfighters.blogspot.com/2012/10/how-did-schwannoma-feel-different-than.html

A Second Perspective - How Does a Schwannoma Feel Different than Normal Back Pain? A 2nd Answer, from a Person Currently Fighting a Schwannoma

http://schwannomasurvivorsandfighters.blogspot.com/2012/10/how-does-schwannoma-feel-different-than.html

Recovery is Not a Two Lane Highway

http://schwannomasurvivorsandfighters.blogspot.com/2012/11/recovery-is-not-two-lane-highway.html

Progress Report After Schwannoma Surgery, Four Months Later, by Jamie Dubinsky

http://schwannomasurvivorsandfighters.blogspot.com/2013/03/progress-report-after-schwannoma.html

The Time Before Schwannoma Surgery, by Vitor De Souza Carneiro

http://schwannomasurvivorsandfighters.blogspot.com/2013/03/the-time-before-schwannoma-surgery-by.html

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

http://schwannomasurvivorsandfighters.blogspot.com/2013/04/sailing-high-seas-crossing-to-recovery.html

Featured Medical Papers on the Study of Schwannomas

http://schwannomasurvivorsandfighters.blogspot.com/2015/12/featured-medical-papers-on-study-of.html

Schwannomas – Articles Dealing with Emotional and Mental Support

Schwannomas, a Story of Discounted Tumors and Misunderstood Pain

http://schwannomasurvivorsandfighters.blogspot.com/2015/04/schwannomas-story-of-discounted-tumors.html

A Q and A with Dr. Anne Barnes, Psychiatrist, on the Mental Aspects of Dealing With Schwannomas & Chronic Pain

http://schwannomasurvivorsandfighters.blogspot.com/2014/12/a-q-and-with-dr-anne-barnes.html

We Don't Play Doctor - But We DO Have a Role

http://schwannomasurvivorsandfighters.blogspot.com/2016/04/we-dont-play-doctor-but-we-do-have-role.html

Schwannomas and Anxiety

http://schwannomasurvivorsandfighters.blogspot.com/2014/10/schwannomas-and-anxiety.html

The First Time I Have Heard the Word Schwannoma on the Big Screen, Thoughts on the Film "50 / 50"

http://schwannomasurvivorsandfighters.blogspot.com/2015/06/the-first-time-i-have-heard-word.html

Living with the Axe Over Your Head

http://schwannomasurvivorsandfighters.blogspot.com/2012/11/living-with-axe-over-your-head.html

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

http://schwannomasurvivorsandfighters.blogspot.com/2013/05/moral-support-surviving-schwannomas.html

Having a Tumor and Chosing Not to Have it Removed

http://schwannomasurvivorsandfighters.blogspot.com/2013/02/having-tumor-and-chosing-not-to-have-it.html

If you would like to contribute your experience to assist others with Schwannomas - or if you would like to do a case study, please feel free to email: neilmyersart@gmail.com, and let me know your story! - Neil

Tuesday, September 6, 2016

A Proposal - The Schwannoma Statistics Project

Hello everyone! Today I wanted to outline an idea that has come about as a result of my work with the Schwannoma Survivors & Schwannoma Fighters group. A great many people who have suffered with Schwannomas have endured a lot of confusion - and even have gone through treatment still with many questions unanswered. So today, I wanted to propose a worthy idea to any medical institution or university that may wish to contribute to our knowledge on Schwannomas...

I would like to propose a "Schwannoma Statistics Project." I would like to see a medical facility or university create and monitor a universal database on Schwannoma statics. It would be my hope that such a medical facility or university would create a questionnaire for Schwannoma survivors that would glean as much medical information about Schwannomas as possible - from the many survivors that we have spoken with on our page and elsewhere. And the answers would supply data for the database.

It would be my hope that:

1) A "Schwannoma Statistics Project" ( or SSP ) would gather accurate, universal data that would allow people to answer basic questions like "How common are Schwannomas?" or " What are the average sizes of Schwannomas in various parts of the body?" or "How common are they in the population?"

2) I would propose that any SSP should share its data with other research and medical facilities that are seeking to learn more about Schwannomas.

3) I would hope that specialized questionnaires may be created to service data relating to the condition of Schwannomatosis, and that as much data on Schwannomatosis would be acquired as possible - with a view towards devising new treatments and new understanding of the condition.

4) I would hope that the SSP would help supply data for any medical specialist writing papers on Schwannomas.

5) I would hope that the SSP would perhaps be able to glean enough data to try to actually pinpoint the usually unknown causes of single Schwannomas. And perhaps even supply information for future genetic testing which may help establish if there are any genetic abnormalities or mutations that would result in a person developing a single schwannoma - rather than Schwannomatosis.

6) I would hope that the SSP could possibly help determine if there are any environmental factors that help contribute to having a Schwannoma - which are as yet unknown.

I invite any knowledgeable medical practitioner or specialist to consider creating such a database. I feel certain that it would greatly help the medical establishment in future research, and ultimately future treatments for those with Schwannomas.

Anyone is free to take this idea and run with it. And myself, and many others at the SS and SF page will happily support any effort to make these tumors better understood.

- Neil
Coordinator of the SS and SF page

Tuesday, May 17, 2016

Schwannoma Survivor Support Page; Email Contacts for Those Newly Diagnosed With Schwannomas

Hello everyone! Previously we had flirted with the idea of creating something I had referred to an an "On Call" list where people newly diagnosed with a Schwannoma could email someone who is themselves a Schwannoma Survivor. It was our wish to continue to help make connections and give people outlets to speak with others who have experienced these rare tumors - and after a discussion on our Facebook page we now have a large enough group to make such a page - so here it is, and here are the ground rules...

First, though we have casually referred to this list an an "On Call" list, we want it to be clear that none of us on this list are doctors. We always advocate that your doctor should always be in the lead in assisting you with your care and Schwannoma treatment. But we as members of a support group dedicated to educating others solely on the issues around Schwannomas - we do offer ourselves for advice, friendship, and support.

Second, if you wish to email a group member below, you are expected to be courteous and respectful. Anyone who does not address our volunteers with courtesy should expect to have their email address blocked by the recipient. We are here to use the internet for the good it can do, and will have no part of the maltreatment of any of our volunteers - all of which are survivors themselves who have dealt with these tumors, and who volunteer their contact information so that they can be of service of others. So - be kind.

Here is our list of email contacts. You will find that individuals are listed here by the KIND of Schwannoma that they have or have had. That allows you to email a person who may have experience with your particular kind of Schwannoma. - Neil

*If you have had a Schwannoma other than one such as what has been experienced by those on this volunteer list ( Such as Vagal Schwannoma, Cervical Spine Schwannoma, or someone with Schwannomatosis ) and if you would like to volunteer an email contact address to assist others - please email : neilmyersart@gmail.com and request to be added to our volunteer email list. Thanks!

*My apologies that there are some text and color related formatting quirks in this list as a result of the cutting and pasting of addresses. Will try to resolve them as best I can. Names and contacts are valid, however.

____________________________________________________

Jana Haustein
Cervical Spinal Schwannoma
Fusion from C2-C6

jjhaustein@q.com
_________________________________

Raelynn Harris

Schwannoma at C6 - C7. Has undergone Radiotherapy treatment.

raekocher@yahoo.com
__________________________________

Karel Kurst-Swanger

Spinal schwannoma removed twice at T-6.

karel.kurstswanger@oswego.edu

______________________________________

Neil Myers

Thoracic Spinal Schwannoma T-8- T9 Complete Removal

(Je parle Francais aussi)

Jenny Dragoo

Spinal Schwannoma between L4 and L5

Jennzaccount@yahoo.com
_______________________________________

Greg Martin

Spinal Schwannoma at L3 - L 4

pgregmartin1973@hotmail.com

___________________________________

Hayley Geach
Spinal Schwannoma at L4 - L5

mallonh@yahoo.co.uk

_______________________________________

Nancy Cohn
Spinal Schwannoma at L4 - L5

ncohn59@gmail.com
______________________________________

Nirit Avnimelech
Spinal Schwannoma L3 - L 4

Nirit is based in Israel and also offers assistance or suggestions
for those who have a Schwannoma and are navigating the Israeli
medical system.

niritav@gmail.com

______________________________________________

Vicki Rushby

Pre Sacral Schwannoma

vianru@hotmail.com
_______________________________________

Nick Weiss
Sacral Schwannoma, 2 removals and embolization of tumor

npwhunts@verizon.net
_______________________________________

Carol Jackson

Sciatic Nerve Schwannoma

Cjackso7@msn.com
_______________________________________

Kathy Mann
Schwannoma at S-1

kathymann60@gmail.com
_______________________________________

(Mr) Dana Gilbertson
Vagal Schwannoma

dgilby@icloud.com

______________________________________

Nature Kastroulis

Trigeminal schwannoma

nature@kastroulis.com
______________________________________

Sarah Boswell
Trigeminal Schwannoma

Sjaboswell@gmail.com

______________________________________

Rachelle Magill

Left eye socket (orbit) next to optic nerve

Jerseygirl057@aol.com
_______________________________________

Pete Bridgeman

Facial Nerve Schwannoma, 7th Cranial Nerve, tympanic segment, on a wait-and-see, no facial dysfunction yet.

petebridgeman@hotmail.com
_______________________________________

Valeda Barnes

Vestibular Schwannoma / Acoustic Neuroma

valeda.barnes@gmail.com
___________________________________

Sigdia Perez

Vestibular Schwannoma / Acoustic Neuroma

(Se habla Espanol )

sigdia26@yahoo.com

________________________________________

Barbara Margarucci

Vestibular Schwannoma / Acoustic Neuroma

margaruccib@gmail.com
________________________________________

Stephanie K

Bilateral Acoustic Neuromas / Vestibular Schwannomas
Diagnosed with Neurofibromatosis Type 2, and with multiple
Other Schwannomas in the Spine and Pelvis

stephanie.reyesmora@gmail.com
______________________________________________________

Amy Jo Williams
Brachial Plexus Schwannoma

Amyjo4041@hotmail.com
________________________________________

Dennis Glans

Large right retroperitoneal paraspinal schwannoma spanning from L3 through L5.

denniegee@cox.net
_________________________________________

Lesely Birse

Large retroperitoneal Schwannoma from L3 that grew into abdomen

lesley.birse@hotmail.co.uk
_________________________________________

Raelynn Harris

Schwannoma at C6 - C7. Has undergone Radiotherapy treatment.

raekocher@yahoo.com
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Kathy Frasher

Kathy has the condition of Schwannomatosis, and has battled it since the age of 13. She would be happy to assist others who wish to contact her at:

kathy_frasher@yahoo.com
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Honey Jerram
Schwannomatosis with Multiple Spinal Schwannomas

honeyjerram@gmail.com
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Babby Busch
Multiple Schwannomas of the spine with suspected case of Schwannomatosis

babbybusch@earthlink.net

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Disclaimer: The Schwannoma Survivors and Schwannoma Fighters page and support group assume no liability whatsoever for the comments or advice offered in the content of this blog. The Schwannoma Survivors & Schwannoma Fighters support group and its volunteers always insist that a person should make all major medical decisions in consultation with one's own physician.