Is there a support group in Lincolnshire ?
Right sided jugular schwannoma - The Brain Tumour ...
Right sided jugular schwannoma
Written by
Knitter2022
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9 Replies
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Hi Knitter: I live in a tiny village in Southern Utah, USA., so nowhere near Lincolnshire, but I too have a schwannoma on my right side at the brain stem. I am 62-years old, and I too am seeking support, but realize there isn't an in-person support group. Perhaps we may support eachother.
Hi sorry to hear you also have a schwannoma but we may be able to offer each other support. I can't believe the condition is so rare though. Mine has affected my throat. I have a paralysed vocal chord and can no longer eat, drink or swallow. I am fed via PEG tube and all oral waste, mainly saliva has to be spit out into a cup, very embarrassing at times. I have also lost my hearing totally in my right ear. I am not on any treatment as no one in the medical world knows what can be done to help. Do you have any of these issues.😀
Hi Knitter: We are a resilient lot, whether we like it or not. After having a large tumor "debulked," I too am deaf on my right-side and I have paralysis on the entire right side of my head and neck. My eating situation isn't as challenging as yours, and I can't imagine how hard that is for you. However, we do have embarrassing eating situations in common. I can't feel food on the right side of my mouth, and only half of my throat, etc., works, so there will be choking incidents if I am not totally careful. Because I chew only in the one side, my molars are taking a beating and I fear a second molar will Crack soon and have to be pulled. At that point, I will rethink my diet again.
My eye doesn't close and requires a Vaseline-like ointment constantly. But the worst thing is that my world constantly slowly moves to the left and bobs up-and-down. It decided to spin faster about six months ago, and adapting has been slow. This has resulted in falls that required more surgery, and here in the US, that means financial ruin which adds so much stress to everything. I still have $20,000 in medical bills to pay, so I have to manage to keep working. I am the villages baker, and during tourism season I do the best I can, but I can tell it's depleting me both physically, mentally, and emotionally. The doctors keep wanting me to get MRIs, but we know the remaining tumor is growing, and I can't have radiation or chemo (I wouldn't anyway), and no way would I have surgery again, so I feel like a small boat that broke its mooring and I am just floating on the sea.
That's me in a big nutshell.
Do you have family that can help you? Have you had surgery? Can they use laser surgery on your tumor? Does your government healthcare system work for you?
I don't mean to pry, but it perhaps as you share with me, it will help you. I know I have to fight not to isolate every moment of every day.
Thank you for replying.
Mimi
Thinking of you and hope you're enjoying this fall day.
I tried to send you a message yesterday but it seems to have vanished off the system. Don't fully understand the workings of the computer. Will just try this short message and see if that works.
It worked! Good to hear from you.
I keep thinking about your comment that Schwanomas are rare. I actually don't know much about them. All I was told is that my tumor appears to have started from an injury to the sheath of my brain stem. They also said I probably had the tumor for 20 years. I had symptoms, but no one ever dreamed of a brain tumor. I did have three "white-out" experiences and a CAT scan was ordered, but apparently tumors don't show-up on those. Too bad, because the tumor was small then. By the time it was discovered it was 3cm. Crazy. Fortunately, it's a slow-growing tumor, but living with it gets old...
How did you find out you had a tumor? Have you had surgery or treatment? What are your biggest challenges today?
Thank you so much for contacting me.
Hi there. Been off the radar for a few days. It was my daughters birthday last Saturday and I was trying to get a sweater finished I was knitting for her. Managed it and she was delighted with it. Went out for a meal with the family, I could only sit and watch them eat but it made a nice change to be out.
I found out about my tumour in February 2020 following an MRI scan. Had lots of tests as I had been losing weight at the rate of 1kg per week and they thought it was a virus. I have dropped from a size 16/18 to 10/12. Cost me a fortune in new clothes. I still continued to lose weight so they fitted the feeding tube in December 2020 and my weight in now fairly stable. I am currently on steroids but on a reducing dose then hopefully stop them. In December 2021 I had gamma knife stereotactic radiotherapy to try and reduce the tumour. It will probably be about 2 years before they know fully if It has worked, but a scan in June showed that it was swollen but decaying from the centre. Am due another scan in May 2023. In May this year I lost the hearing in my right ear overnight, which was quite a shock. I have been measured up for hearing aids to try and help and I heard from the hospital today that they are ready and will be fitted in 3 weeks time.
The hospital told me that my schwannoma is rare as it affects nerves IX, X, XI.
I follow the Brain Tumour Charity on Facebook and recently became a volunteer knitter. They are sending me patterns and wool so I am really looking forward to that.
How are you keeping ?
The weather here is very Autumnal but very pretty with the lovely colours. The shops are filling up with Christmas goodies and the Christmas market will be in Lincoln in early December.
Hope to hear from you again soon.
Take care x
How lucky to be your daughter and the BTC to receive handmade sweaters! What a cozy, lovely gift. Thank you for your volunteerism too!
Christmas! Yes, today I will be getting out all of my decorations so I can get a headstart. This is my last year decorating outdoors, at least. My granddaughter is coming this year, so hopefully she'll want some decorations. Otherwise, thrift shops here I come.
I too attend dinners without eating. Or I try to order something easy and safe to eat. How is living with a feeding tube? I am glad to hear your weight is stabilizing and that the Gamma Knife procedure is working.
I wanted to have Gamma Knife, but because the procedure causes swelling and my tumor is on the brain stem, they said it would probably kill me. But, killing the tumor from the inside out is the hope, so let's cheer that progress onward!
My empty coffee cup, one hound dog, two cats, and three foster kittens penning me down.
Zhaleh_TBTCAdministrator
Hello, thank you for your post and reaching out to the community here. You can search for support groups in Lincolnshire through the Macmillan website. They sometimes have information on cancer specific support groups: macmillan.org.uk/in-your-ar... I hope this helps and you're able to find a group that suits you. Kind regards, The Support Team
