Hello everyone! We have been doing the series in which we sought to understand how long recovery times are for people with various kinds of Schwannomas. Though we can't ask the question in exactly the same light - I wanted to also include our friends with Schwannomatosis. Schwannomatosis is the rare condition that predisposes a person to multiple Schwannomas in almost any part of the body. It is understood to be a rare offshoot of the genetic condition of Neurofibromatosis - and it can lead a person to have multiple Schwannomas along almost any nerve pathway in the body, except the auditory nerves where Acoustic Neuromas arise. And there is a known variant of Schwannomatosis called "Segmental Schwannomatosis" where people can have sometimes many multiple Schwannomas in one part of the body - in a leg, or a single area of the spine, for example. Though life with Schwannomatosis presents challenges unique to the condition - and there is not often something such as 'getting over' it...we did want to include the question to our friends with the condition. Here are there responses...Neil
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Answer 1
I was diagnosed with this this past February. They found a second schwanomma in my body in six months. I am still new with this whole experience. Right now I have continued about my daily life, but fearful of finding another one. I definitely panic more when I feel a pain often wondering if it is another one in my body I didn't know about. (The one in my foot I went with for years before really getting checked out because i thought it was just a cyst in my toe. I didn't realize it covered the whole bottom of my foot.) I was never one to panic before about aches or pains, now I do have to be more aware. I was in the process of trying to get life insurance and was denied the life insurance due to my schwanommas. They told me if I do not have another schwannoma for five years I can apply again. That was hard to hear.
Answer 2
I was diagnosed with Schwannomatosis one year ago along with two of my daughters. My son has recently been tested all clear. Still have four more children awaiting testing for the SMARCB1 mutation. My journey began over 5 years ago when I developed stabbing pains in my foot. I was given an operation to correct hallux rigidus in my big toe and was told that it would cure my pain. It didn't obviously! After years of foot x-rays, foot mri scans, spinal manipulation, epidural injection a doctor decided to send me for a spinal mri. The results came back with several small nodules/tumours in my lumbar spine! Only a few weeks later my then 18 year old daughter suddenly became unable to walk properly. She was taken to A&E where they did various reflex tests and a rectal examination and kept her overnight. In the morning she had an mri scan which revealed two thoracic tumours, 52mm and 18mm. She was moved to a nearby university hospital where they removed both tumours during a 7 hour operation. For days afterwards she couldn't move anything below the waist. She was desperately unhappy and is was so upsetting as her mother seeing her go through this. She eventually got up and about with a zimmer frame after two weeks but kept falling so was confined to bed with a catheter. She was moved to a specialist spinal injury hospital which frightened the hell out of her as there were mostly paraplegics there. After 5 days she discharged herself as she didn't fee she belonged there. She said she would get better more quickly at home where she was happiest. Which turned out to be the right move. She started university 3 months after the operation on crutches. She walked as much as she could and was down to one crutch after a few weeks. By January, 6 months, after the operation she was walking unaided. She continued to improve and two years later she says she is 92% her original health. She still has very slight foot drop but hardly noticeable. Myself, the surgeons won't operate unless my symptoms change affecting my legs or bladder/bowel function! Similarly my other daughter in London. I now have all my fingers and toes crossed that none other of my children are affected.
