Share your story, find support and information, and discuss symptoms and management of schwannomatosis.


radiotherapy and chemo for schwannomas ?

  • By kala · New reply yesterday at 11:54 am
  • 6 replies
  • Did anyone have radiotherapy or chemo for begnin tumours ? I'm after 15 spinal ops and I still have tumours by the dozens in my spine pelvis stomach buttocks arms and legs . I've been told that there ...

New treatment for schwannomatosis

  • By kala · New reply yesterday at 7:36 am
  • 17 replies
  • It seems that there might be new hope yet for treatment for schwannomatosis . Have anyone read this report -changes-in-gene-explain-more-of-inherit ed-risk-for-rare-disease ...


  • By taffy222 · New reply April 21, 2014
  • 7 replies
  • Just wondering whether having schwannomatosis makes one more prone to uterine fibroids? I have had fibroids for around 15 years which haven't really affected me much until the last 2 years where my periods ...

Schwannoma Pain

  • By enigma3361 · New reply March 30, 2014
  • 8 replies
  • I have schwannomatosis in my left leg and hip area. I have had 10 tumors removed so far. Each time I have experienced relief. However, I still have many tumors and sometimes I am in a lot of pain. I recently ...


  • By Kiarae · New reply March 29, 2014
  • 2 replies
  • I need some info first hand from people and the the clinical studies we can all find on the internet as I have searched extensively in this. I hope to hear from some people to get a better understanding ...

New here with a Schwannoma.

  • By janete53 · New reply March 25, 2014
  • 3 replies
  • Hi, I have already posted on here once but am posting again because I forgot to introduce myself. I am a 60-year-old woman with a schwannoma on the C2 which has grown into the spinal canal and is pushing ...


  • By neverstoppers231 · New reply March 25, 2014
  • 6 replies
  • Hello there, I am a 8.5 year survivor of MPNST. I was one of the lucky few to be diagnosed , very very early in the process. I credit this to having great health insurance. Its amazing to me how everything ...

swannoma under knee cap. Anyone else experience this?

  • By Kellykel78 · New reply March 21, 2014
  • 2 replies
  • I had a bad fall and injured my left knee. I was sent in for a mri. Turns out I had no damage to the knee its self But they found a tumor. Dr called it a swannoma. Has anyone else had a swannoma in their ...

Schwannoma on C2

  • By janete53 · New reply February 24, 2014
  • 16 replies
  • Hi, five years ago while getting an MRI for my sinuses they found a 2mm schwannoma on the C2 nerve against the vertebrae. I was told at the time ( I was 55 years old) not to worry about it, they are benign ...

Another schwannoma

  • By taffy222 · New reply February 23, 2014
  • 3 replies
  • We had the results of my daughters scan yesterday. They have found another schwannoma in her left thigh. That's the reason she has had some pain there. She is now scheduled to have it removed next month ...

Schwannomatosis and kids/pregnancy

  • By Dfarrel1 · New reply February 11, 2014
  • 7 replies
  • Hi All, I am a 29 yo female with schwannomatosis and am wondering how others with the disorder have approached having children, knowing there is a risk they too will be affected by the disorder. I struggle ...


  • By snowflake71 · New reply February 7, 2014
  • 9 replies
  • well just heard that I need an operation to remove the 2 tumours from my spine c2 region and growing into my nervous system, I am so scared, has anyone had this op done? what is the recovery time like ...

needing medical advice

  • By Terin · New reply December 16, 2013
  • 4 replies
  • I have nd type one I've got two tumors in my sacral region I'm needing Advice of who to go to about removing them their causing major Problems and complications and they think they might be schwannomatosis ...

Possible Schwannomatosis?

  • By mjonis · New reply November 30, 2013
  • 4 replies
  • Try to make this brief. Found a lump above right collar bone, went to GP, said lymph node. Went to ENT, ordered a CT scan. CT Scan came back undetermined mass. Did a FNAC w/ultrasound, at which point ...

Have a date

  • By snowflake71 · New reply November 20, 2013
  • 6 replies
  • well I go into Stoke Hospital on Sunday 22nd, operation schedualed for monday 23rd, very scary, still not been told what type of NF I have or anything but have a meeting on the 19th so will hopefully ...

segmental schwannomatosis

  • By taffy222 · New reply October 3, 2013
  • 3 replies
  • Just thought I would give a quick update. My 18 year old daughter (daughter 2) went to uni for her first year yesterday. She is getting better at walking and physio now want her to use only one walking ...

multiple spinal tumours

  • By taffy222 · New reply September 3, 2013
  • 8 replies
  • Hi I had a recent MRI to try to find the cause to my peripheral neuropathy in my left foot and instead of telling me I had sciatica I was told they have found several small tumours on my spinal cord in ...

Newly diagnosed

  • By snowflake71 · New reply August 13, 2013
  • 14 replies
  • He all after several MRI scans 2 tumours have been found in the top of my spine so I was reffered to a neurologist who says it's NF, we are unsure as to what type I have but he thinks maybe "schwannomatosis ...

pain pump

  • By kala · Posted June 30, 2013
  • 0 replies
  • I was wondering if any of ye have had a pain pump fitted and if it worked? I have been given the choice of getting one or not and I'm not sure what to do . I'd be grateful if anyone had any ideas on the ...

HonoPure and Bio 30/100

  • By zhanna · New reply June 10, 2013
  • 1 reply
  • Hi everyone, I just want to share my experience with Bio 30/100 and HonoPure. I have HF2 and currently I have 3 tumors in my head that I'm aware of. Two are on my left side that are measured like one ...

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