Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Schwannomatosis
Share your story, find support and information, and discuss symptoms and management of schwannomatosis.
Diagnosis after 22 years !!!
- By kala · New reply November 22, 2009
- 17 replies
- Finally after 22 years I've got a clinical diagnosis of schwannomatosis after a blood test to identify the gene. I've had 11 spinal operation and constant pain. But just to be able to put a name on it ...
how do you cope with long time pain ? any ideas ?
- By kala · New reply November 21, 2009
- 13 replies
- Yesterday i got a letter from my specialist telling me that there was no major changes in my scan since 2007 (then there was about 10 tumors on my spine all relativly smallish) anyway i was devastated ...
New to this - any advice?
- By dogzmom42 · New reply November 3, 2009
- 8 replies
- I was recently diagnosed as having a schwannoma or NF tumor on my upper left arm. It is on the underside of my arm - not really noticable unless I flex my muscle, then it bulges out and is very noticeable ...
Any Children?
- By nelly004 · New reply November 3, 2009
- 6 replies
- Hi Do any of you Schwannomatosis sufferers have children? My husband has been diagnosed with this condition and we have 2 babies under the age of 2. Before we started out family my husband was diagnosed ...
HELP
- By JAMIEKAY · New reply November 2, 2009
- 1 reply
- My son has NF1 one of his doctors thinks maybe he has both,but now iam thinking he has schwannomatosis.Matthew has pain other doctors cant explain.We have a doctor appt on the 20th that deals with only ...
Eye Dilation
- By Lumpy · New reply September 4, 2009
- 2 replies
- Does anyone have problems with eye dilation? My daughter's eyes seems to be dilated about 70% of the time. She has had this for sometime now and she goes for regular eye exams, so I wasn't to worried ...
please help
- By kala · New reply August 17, 2009
- 4 replies
- I'm going for another operation tomorrow and going into hospital today for another removal of a tumor . I was told i most probally had schwannomatosis . my question is that can i get a definite diagnosis ...
advise please did i do wrong?
- By kala · New reply August 11, 2009
- 25 replies
- last night i was at a family get together and my entire family (8 siblings and parents) told me that i was entirely selfish for giving my daughter information on nf. When something was mentioned about ...
actiq painkillers
- By kala · New reply July 31, 2009
- 5 replies
- just wondering if anyone have used the painkiller actiq its the lolli-pop type on the stick . i have started usng it last week and so far its great used in combination with other meds but i was wondering ...
Please Help.
- By worriedfriend · New reply July 5, 2009
- 1 reply
- Hello everyone. I'm wondering if anyone had any information on charities that could help a family who is in a very critical financial situation and who's daughter has schwannomatosis. She has had 11 opertations ...
nf foundashions
- By BrittanyNF3 · New reply June 12, 2009
- 3 replies
- dose any one know if there is a nf foundashion that helps with nf patients with travle cost.. my mom gots togo to texas to get a tumer removed and we just dont have the money to get there . so i was just ...
How do you treat your pain?
- By 3Pacers · New reply March 15, 2009
- 6 replies
- I'm researching possible treatments for my son's chronic pain caused by this disease. What have you found to be helpful? If you have tried any treatments besides taking oral pain medications, I would ...
is there really clinic's that deal exclusively with nf?
- By kala · New reply December 15, 2008
- 2 replies
- From reading this site i keep seeing about these nf clinic's are these dealing exclusively with nf? I live in Ireland and when i first went to the doctor 22 years ago i was the only patient that my surgeon ...
Very rare!
- By russtoo · New reply August 4, 2008
- 3 replies
- Hi; Now this one is more rare than NF-2, isn't it? Russ ...
