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.
______________________________________
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)
_______________________________________
Christopher Blunt
Thoracic Spinal Schwannoma
T-11, T12 removal and fusion with eventual 5 level titanium fusion
christopher@fair-wind.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)
_______________________________________
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
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
______________________________________________
Vicki Rushby
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
______________________________________________
Vicki Rushby
Pre Sacral Schwannoma
vianru@hotmail.com
_______________________________________
Nick Weiss
Sacral Schwannoma, 2 removals and embolization of tumor
npwhunts@verizon.net
_______________________________________
_______________________________________
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
______________________________________
_______________________________________
Kathy Mann
Schwannoma at S-1
kathymann60@gmail.com
_______________________________________
(Mr) Dana Gilbertson
Vagal Schwannoma
dgilby@icloud.com
______________________________________
Nature Kastroulis
Trigeminal schwannoma
Sarah Boswell
Trigeminal Schwannoma
Sjaboswell@gmail.com
______________________________________
Rachelle Magill
Rachelle Magill
Left eye socket (orbit) next to optic nerve
Pete Bridgeman
Facial Nerve Schwannoma,
7th Cranial Nerve, tympanic segment, on a wait-and-see, no facial dysfunction
yet.
Valeda Barnes
Vestibular Schwannoma / Acoustic Neuroma
Sigdia Perez
Vestibular Schwannoma / Acoustic Neuroma
(Se habla Espanol )
________________________________________
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
________________________________________
________________________________________
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.
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
________________________________________
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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.
