Hi Shaun, so sorry to hear what you are going through, prayers and thoughts with you.
All I know is my partner has Schwannomatosis on a main nerve within the pelvic area, sometimes experiences considerable pain, scan twice a year to catch it if anything changes, they would suggest an operation, but the chances of ending up in a wheelchair is very high. This does give bad anxiety not knowing what the future holds.

In all the time I have had these schwannomas they never seem to enlarge after circa three months, yes they did do surgery in Dec 1997 after about two and a half years, it was a Dr Byrnne that did the surgery, in RVH in Belfast, only after finding it after a MRI, numerous x-rays did not show a thing! I remember being told it was the size of a walnut on the right side of my spinal cord, about 3/4 of it being removed. [Recent MRI (June 2023) showed the scarring on my spine, but no growth] Then they lost the surgery notes🥴 my third operation after four years [2008-2012] was basically they did not have a clue having lost any subsequent notes of my previous surgery, a change of GP and asking the right people within three months diagnosed and successful surgery. [I was not told about the loss of the surgical notes in 1997, until I obtained my own Schwannomatosis specialist in 2021] For obvious reasons not much faith in NHS over here🙄 I have had about 20 schwannomas that I could identify over the years, the spinal one seemingly the most dramatic, my arms are the worst cause for alarm, hard to identify due to being under the skin schwannomas/benign growths attach to nerve root canals, pain caused by the particular affected 'limb' being rubbed against internal skin and working of that affected limb😒 usually a tell tale coffee mark shown on the skin about 2-3 cm from the particular schwannoma?
Any news please keep in touch, certainly I'm the only person in Ireland with the condition, a bit rarer that most people think?

Hi Shaun, sorry for late reply. My partners is on the spinal cord deep in the pelvic area, it's now at a size of 7mm gone from 5mm in a couple of years, not sure what size these need to get, to to be operated on but they really want to avoid any operation unless absolute necessary. They found it through carrying out a scan due to constant lower back pain. MRI every 6 months with a follow up once a year with consultant.
Sorry to hear of all you are going through, stay strong.

Dear Ellen has your partner got a personal specialist? A MRI is usually best for viewing, I had my operation in 1997, not much was known about, Schwannomatosis, my benign growth was on my spinal cord [still a bit there] on the right side, not much was known then, still not much changed, they did not even call it Schwannomatosis, it did relieve a lot of the pain, about the size of a walnut, I still get slight numbness in my right leg. I was aged 41. I have a few all over my arms, hands, legs, and a few on the trunk of my body! I also had a bad reaction on my left arm in 2021, reaction to the AZ vaccine, although never had Covid-19 itself. Having had the condition for so long, first operation back in 1970, a small benign growth on my left forearm. My second in 2012, was eventually removed, I had to sign various legal documents about that, my small finger on my left hand, has become numb, about 25% use of! I personally have found from my early 60's the schwannomas turned gelatinous after about ten days, reduced in size, have one on my right forearm now had that for five years, small lump usual coffee mark near to it on my arm, my body seems to 'accept' it no pain, was the size of half baked bean! Had two about the same size on my prostate gland from Dec 2019, caused urinary trouble, still under diagnosis for Prostate Cancer, from June 2022, delayed due to pandemic [gone gelatinous]! Any advice please get in touch, I was lucky in 1997, in that not much was known about it, although surgical methods have improved vastly since then! What size is the schwannoma/benign growth?

You are the very first person I have EVER heard that has actually got the condition! I have had three operations to remove schwannomas, my second one was on my spinal cord, not found for two and half years, in 1997 [size of a walnut] not completely removed, the surgical details were lost, thus when I had another one on my left elbow, [caused after effects of small stroke?] they did not inform me original 🙄surgical details were lost, thus took four years [2008-2012] to diagnose and remove it🙄 finally diagnosed as Schwannomatosis NF3 in 2017, have my own personal specialist since May 2021, but because lack of general knowledge of condition , not really much help! I have tried over the years to make notes and symptoms, but essentially like water off a ducks back! Ironic have severe chest cage deformities, a seizure in 2017 [have JME epilepsy] I shattered my chest, "he will be in a wheelchair by five years!" 😝 proved them wrong there👍 Hospitals have lost interest when I say "I have Schwannomatosis or NF3!" If he wants to swap symptoms and notes, no problem, have had the condition since 1970, I am aged 67!