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)

neilmyersart@gmail.com
_______________________________________

Beth Kelly
Thoracic Spinal Schwannoma at T8- T9, not yet removed.

(Beth is battling a Schwannoma and also Hemophilia.  She is happy to help
others who may be in the same situation, ie, battling Schwannoma and Hemophilia)

bethk4321@hotmail.com
_______________________________________

Christopher Blunt
Thoracic Spinal Schwannoma 
T-11, T12 removal and fusion with eventual 5 level titanium fusion

christopher@fair-wind.com
__________________________________

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
_____________________________________

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
___________________________________________

Honey Jerram
Schwannomatosis with Multiple Spinal Schwannomas

honeyjerram@gmail.com
_______________________________________

Babby Busch
Multiple Schwannomas of the spine with suspected case of Schwannomatosis

babbybusch@earthlink.net

________________________________________

____________________________________________________________

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.